I Don’t Know What to Call It

Disclaimer: If you are reading this and you are a family member of mine you may find this topic and story upsetting or uncomfortable. You may want to skip this post.

I like how WordPress prompts you to share your story…but sometimes I’m not sure I have a story. I often feel empty of words when I want nothing more than to share. But right now, I have a story to tell and share with you.

I was 14 years old…only 14. Do you remember 14? I remember it pretty clearly, which is impressive to me because my memory can be cloudy at times. It was summertime, sometime around the 4th of July. In fact, it may very well have been the 4th of July. Hence the reason I have never liked the 4th of July, until the last two years. I’m so grateful I have new and wonderful 4th of July memories now. 

At that young age of 14 and on that night I was drinking alcohol and spending my free time (which I had plenty of) with some girls who lived with very little supervision and drank more alcohol than any 14-15 year old should ever drink. Little did I know how those first summer nights of drinking would lead me down a path of torturous regret for the next 20-25 years. (I don’t feel like doing math right now, so we’re just guesstimating here about the time spent with alcohol wreaking havoc on my life.)

I grew up with a sense of anxiety in my belly. I’m not sure exactly when it started but I’m guessing sometime around the time my parents divorced at age 6. I battled for a sense of fitting in, for belonging, from such an early age. I believe with my heart and with all of my genetic predispositions that this anxiety and emptiness made me the perfect candidate to become one of alcohol’s many victims. It perforated my blood and brain matter leaving me mostly defenseless against the conniving snake, alcohol. Like an open wound begging for a bacterial infection, I was of particular vulnerability.

As young girls with our own personal struggles in our hearts and souls we found the attention of older “boys” particularly attractive and they found us attractive, too. Not to mention they had a Jeep! What teenage girl didn’t think a tan boy with a Jeep was attractive in the early 90’s? One in particular found me to be of special interest or perhaps it was more like an animal finding easy prey, I’m not sure. His name was Jack, not really, but that’s what I’ll call him here. I don’t know anyone named Jack, so that sounds good.

I remember little but a few things stand out from that night. Beer, an endless supply of beer, a sandy beach by a lake, fireworks and strangers everywhere. I felt lost. I remember feeling lost. Then, later,  a dark dining room floor…carpet, confusion, pain and helplessness and that boy/man, 21-23 year old Jack. But most of all, more than anything, I remember shame. 

  

A shame that wouldn’t leave, for years upon years, because it became layered with more shame and regret, and incidents and a variety of abuses (both self-inflicted and not) piled on top of one another.

I don’t know what to call that night. My first time? A nightmare? A bad memory? Or was it something more…was it rape? I still don’t know what to call it 25 years later. 

Later that same summer I experienced an event easily identifiable as date rape. I remember scenes from that night as well…like a movie (gratefully not a full length feature) playing in my mind. A montage of feelings, smells, and images that have haunted me since. 

I don’t know what to call this, me writing these memories out, but I know that too many women and men have experienced dark moments like mine and have not been able to share. I know too many sit in silence. I know we human beings need or want to know that we’re forgiven, EVEN if it’s not our fault. 

I’m grateful now that I know I’m forgiven. God’s grace covers me and fills me. I no longer have to sit in that slimy dark pit of shame. I’m free.

But I wonder how many don’t feel free. I wonder how many teenagers have experienced something like this already this summer and last summer and the ones before who are stuck in despair.

Maybe one of them will read this somehow and just know that they aren’t alone. Maybe they will talk to someone. Maybe they will find freedom much sooner than I did.

And the Doctor Never Called

A few weeks ago I was having trouble with a cough that wouldn’t go away. I let it carry on a while thinking it would just go away but when I became increasingly fatigued and continued to feel really lousy for a few days I relented and made an appointment to see a doctor. I have been bad about seeing one doctor consistently in recent years. I typically go to the same practice for all of my health needs but I have not attached myself to one primary care physician, mostly because I simply haven’t found one that I like that much or that seems to take enough interest in my long term care for me to feel any desire to “sign up” per se. My recent experience only reinforces that, and well, I guess I need to do some doctor shopping now.

As a person living with a few chronic health issues it would be wise to get connected to one doctor that I felt comfortable with and could trust. But that is a completely different topic, I’m off track.

I made an appointment at the health practice I usually visit because of that annoying cough and my general malaise. I’m leaving the practice nameless for now because I don’t want to draw attention to them as much as I want to draw attention for a gaping hole I see in healthcare. I was able to get in to see the doctor pretty quickly, I went to the doctor’s office on a Thursday morning. I don’t normally recall things like that but after my experience, I remember it well. 

After a brief exam with a pretty stoic physician, he said he would like to have some x-rays taken of my lungs, just to make sure there wasn’t any pneumonia or anything like that going on. He thought it was just bronchitis but wanted to make sure. This seemed pretty reasonable to me and the practice has those capabilities in-house, so it was easy peasy to walk around the corner and have the chest films done. After the standard angles were shot I went back to my room and waited. A few minutes later the x-ray tech came and got me and said that the doctor wanted to get another film of a particular angle that she didn’t take before. While standing in the radiology room and turning in a different way than I ever have before for an x-ray, and with my arm raised awkwardly above my head, I became aware that perhaps they were looking for “something”, you know, something ominous. 

  
After that, I sat in the exam room with a little bit of anxiety welling up inside of me. It was a strange sensation really. I tweeted that I was being an “impatient patient” at the doctor’s office and thought to myself, it sure would be strange if this were one of those moments before all things in life change, all perspectives, all gifts becoming more bright, all blessings more vivid…you know, things like that.

When the doctor returned, the first thing he asked me was if I had ever been shot in my chest. I found this pretty strange, to say the least. He said there was an odd shaped abnormality in my left upper lobe that looked to be fairly calcified, almost like scar tissue or a piece of twisted metal. Since I have not ever experienced such an injury, he wanted to have the radiologist look at the films and determine if a CT scan would be needed. He showed me the films and I saw something strange in my lung, something I now have a permanent (perhaps semi-permanent) picture of in my brain because I obsessed over it for many days. 

After waiting over a weekend (which was brutal for obvious reasons) and a couple phone calls on my part to the doctor’s office, I found out that the radiologist recommended a CT scan with contrast. Then, the process of getting approval from my insurance began, which took a few more days. By the end of the week, I had researched sub-centimeter lung nodules extensively online. I found that by and large, they are non-malignant and they are very commonly discovered by accident, much like in my experience. In fact, it’s becoming sort of a “problem” in the medical community because previously these never would have come to anyone’s attention and the use of CT scans and additional methods of testing is sometimes thought to be too extensive and unnecessary. But, like me, patients want to know if these abnormalities are malignant. If they could be or if they might become malignant, it’s kind of important.

So a week and one day later post the initial exam, I had my orders with approval for a CT scan with contrast. I called a highly respected imaging center in town and scheduled my appointment. They were able to get me in the next day, which was a great relief to me. One reason I picked this imaging center was that I knew they had a quick turnaround for providing results to patients and you can pick up your radiology report and images, usually 24 hours after your test. The test itself was fairly uneventful. I got a raging headache from the contrast and the warm sensation that flows through your body when the contrast goes in was nothing short of bizarre, but aside from that all went smooth. Finally, Monday came and my husband picked up the report and my digital record of the films. 

Conclusion: calcified lung nodule. Most likely benign.

Additional note: minimal dependent atelectasis. (That means a small part of my lung was not inflating properly.)

The tech who gave my husband the results told him that usually minimal dependent atelectasis is treated with some medication but we need not be worried about it, it could be treated and follow up should take place with my doctor.

I had my results and I could relax. After 10 days of worry, I could rest and know that chances are really, really good that this lung nodule will never turn into anything. After my research, I also noted in my mind, that my doctor may want to follow up with exams every 6 months for a while to make sure the nodule doesn’t change or do anything funky.

With this information in hand, I waited. I waited for my doctor to call. I waited for the doctor’s office to call to discuss the results, to put my mind at ease. I waited for them to call to discuss the need for treatment for the atelectasis. But guess what? They never called. Never. Not a couple days later. Not a week later. Not even 3 weeks later.

I find this incredibly disturbing and mostly, negligent. I continued to wait because I felt better. I continued to wait because I was reassured by the radiology report that all is fine. I continued to wait because I really just wanted to see if they would ever call. That may or may not have been the best way to handle it and I’m still on the fence about calling that practice at all to let them know that I fell through their cracks. 

The thing is, I wonder how many other people are falling through the cracks, the gaping wide holes and canyons in our healthcare system. If it happened to me, well, I know it’s happening to a lot more people with more important and pressing needs, I’m sure of it. We’re more than a name on a clipboard or an account in a software program aren’t we? We are people with friends and family and co-workers and people who depend on us and need us and our doctors are supposed to be there to help us be as healthy as we can be. But sometimes, they just never call.

You Want Me to do What? Why You Should Consider Clinical Trials as an Option

Okay, so I’m writing about something that may seem totally unrelated to my normal content here on Una Vita Bella, but what’s “normal” for me anymore? Not much. The one thing that is normal is that I have always had a focus on well-being and health and that continues to be the case, whether it be mine, a family member’s or even the neighbor down the street. And with Health Activism as a pretty healthy focus of mine (see what I did there?) I think it won’t surprise anyone too much that I have an interest in sharing information about clinical trials with you.

I used to be afraid of clinical trials, in fact, I would always want to be an informed patient before I participated in one myself, but that’s part of being a responsible patient. After a health scare of my own recently and learning about others who face health challenges of their own and have participated in clinical trials, I’m not afraid to say that I believe clinical trials are important – nor would I hesitate to look into them for a health issue I face personally or for my own family.

Clinical trials are the route all investigational treatments or medications must go through before receiving approval and becoming available to the general public. They are regulated research studies that provide hope to many. Without these trials, we would not see advancement in treatments or medications.

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I have had the pleasure of becoming a CureClick Ambassador recently and as a result I am learning so much about clinical trials and what is available to the public. I sincerely believe these trials are amazing avenues to further our knowledge of diseases and illness and provide unique opportunities for their participants. Because of this, I want to share one particular trial that is accepting applicants currently.

Here are some details:

“The SPIRE program is looking for people who are taking a cholesterol lowering medication but still have high cholesterol. If you qualify, you might be interested in participating in a research study.

This study evaluates the PCSK9 inhibitor, Bococizumab compared to placebo, in reducing the occurrence of major cardiovascular events, including cardiovascular death, myocardial infarction, stroke, and unstable angina requiring urgent revascularization, in high risk subjects who are receiving background lipid lowering therapy and have cholesterol laboratory values of LDL-C >/= 70 mg/dL or non-HDL-C >/= 100 mg /dl.”

The full study details and eligibility criteria are listed here.

High cholesterol is linked to increased risk of heart disease and often times lifestyle changes such as a healthy diet and regular exercise can have a positive impact on cholesterol levels. (Mayo Clinic) There are times when medication is needed and situations where lifestyle factors are not the only factor at play. Some people may have genetic and hereditary causes for high cholesterol. (Mayo Clinic) No matter what factors are involved, it’s an important issue to address. If uncontrolled, you could be at increased risk for heart attack. (Mayo Clinic) With this in mind, if you are currently on medication for high cholesterol or know someone who is, this clinical trial may be a great opportunity for them or you. Please don’t hesitate to share the information because you never know who it may help and who may be eligible. http://curec.lk/1csS0Sz

With all that said, here’s a little more about clinical trials so that you can be better informed, too.

top-reasons-people-choose-to-participate-in-clinical-trialsstudy-volunteer-ratings-of-the-quality-of-care-that-they-received-in-a-clinical-trialPeople tend to choose to participate in clinical trials in an effort to help advance the field of medicine and improve the lives of others, a pretty noble thing to do! Also, participants find that the quality of care they receive while participating is excellent.

Watch for further shares of clinical trials available to you via this blog and on Twitter. And one last time, if you want to learn more about the high cholesterol trial I mentioned above, click here!

HighCholesterolWhile this post may be different from many of my past, you probably know I feel passionate about health and that is not limited to mental health or chronic pain conditions only. To have the chance to spread the word about the availability of clinical trials is something I feel privileged to be able to do! If you would like to know more about my relationship with CureClick, please go here.

Do Not Be Afraid

Share your story. Be real. Be authentic. Find your niche.

I’ve been stuck in this abyss of wondering how to do all of this…for months and months and months. I used to bare it all for you and now I’m afraid. I used to give everyone the nitty gritty details of my life and people read it, seemed to relate and maybe even liked it. I liked it. I loved knowing I wasn’t alone. I loved feeling brave and being real, even if it meant some would misunderstand or misinterpret my words or state of mind. It felt so goooood to release it all, put my mess out there, here and everywhere and get feedback…maybe even I could be so bold as to say I might have liked the attention. 

Life can feel lonely at times. Blogging friends, supporters, Twitter friends, you know…real people acknowledging you, your pain, your joys, your existence, just feels nice, right? 

But, now I sit here (in the hair salon, hallelujah!) and I have to figure out how to be those things I first mentioned in the beginning all over again. I have a new and amazing life. It’s like I received a fresh start in a multitude of incredible and ridiculous ways, but all the things and topics I have touched on before are still a part of my life – and more. 

What to say, what not to say…self-censorship is on my mind more than it ever has been before. 

I fear for saying something my ex-husband could use against me someday in a child custody hearing. I fear that my new extended family would be embarrassed/concerned/ashamed if I bared it all. I fear that discussing the topics I used to talk about so freely (as well as new ones) would hurt my ability to help provide for my family if push comes to shove and I have to look for work in the corporate world or even now as I continue to build my own independent contract book of business.

Paul says, in the Bible, “Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus” (Philippians 4:6-7). And if I’m called to share my heart, then I need to let go of this fear. I can trust in Him. It doesn’t feel so simple today, though.

So, I’m starting by sharing my fears with you here and now about all this because that is as real as it gets. I’m taking baby steps. (I can’t say that without thinking of “What About Bob?“) 

I’m sharing my desire to find my place online again. I’m just another voice in the crowd, but I think all of our voices matter. I think God has given me a story, a life, that matters. 

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The Key to Happiness 

Day two of #HAWMC is a doozy. We’re given one of life’s greatest and most debated questions to answer. The folks at WegoHealth must know how wise we are, us health activists. 

The truth is, whether you’ve faced major health challenges or not, the answer (in my opinion) is the same. How you come about realizing it may be a different journey for each of us, as well as how long it takes to get there, but the getting to it isn’t the writing prompt today. And you know what, I think the answer to this question is actually pretty simple.

Simple. It’s the little things. The key to unlocking happiness (which I must remind you is transient and much different from peace or joy) is in the simple moments and the sacred minutes in life in which you take notice. 

When I was in the throes of illness and pain from Fibromyalgia I gradually learned to treasure the brief and tender moments with my children rather than focus on a perceived lack of them. I learned to focus on the seemingly small stuff in life like a laugh coming from the other room, the birds chirping outside my window or dappled sunlight shining through the curtains. 

Illness taught me to be still. It taught me that happiness really can be found in the wiggling of my toes against cool sheets or in a silent prayer of gratitude. 

My, oh my, how easy it can be to forget this simple little key we all carry in our pockets! In a hurried and busy world full of demands we may find ourselves grumpy and stressed but we can do the simple thing and STOP. Take notice. Purposefully step outside. Take it in. Take it all in. 

Happiness lies in the little things and small moments, friends …with perhaps a dose of good perspective, but it’s there, just waiting to be unlocked.