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Filling the Gap | Results are In

chronicwhispers

November 18th, 2019 | Based on @chronic_whispers Instagram Post

I got my latest blood-work and elbow x-ray results today and they both surprised me.

I injured my elbow in April and have had intense pain and inability to use it in certain ways for the past 3-ish months. I was convinced it was fractured, but my x-ray was apparently completely normal. So, I guess that’s good, but my elbow still hurts!

My blood-work had some expected results, but 2 surprising results as well. One, my Carbon Dioxide was low. I googled it and it seems kidney issues or Addison’s Disease seem the only real options from the results I saw as I don’t have any issues with diabetes. The doc says its nothing to be concerned with though.

Finally, my ANA ws positive. It hasn’t tested positive in years. It was about 8 yrs ago when I was diagnosed with Mixed Connective Tissue Disease (MCTD) by my PCP & Rheumatologist. When I moved states a new Rheumy removed that diagnosis because I didn’t have a positive ANA. My current doc, that ordered this test, said she thinks I might have MCTD and wants to send me to a specific Rheumatologist. I had to laugh but was also mad. If I have had MCTD this whole time and just wasn’t being treated for it appropriately its kind of upsetting. However, I was so happy to have my results finally show positive!

Only chronic illness warriors without concrete evidence know and experience joy in a positive test result. We are NOT happy to be ill. We ARE happy to have “proof” (for others) that the pain, fatigue, and countless other struggles we face behind closed doors truly exists.

It sucks fighting something nobody can see – especially when our entire existence is affected by it and people accuse you of being lazy or faking. (I STILL have no idea why someone would want to give up their life to fake being sick.)

Like I mentioned, I haven’t had a positive ANA test result since I was first diagnosed with Fibromyalgia and Mixed Connective Tissue Disease over 8 years ago. Thus, they removed MCTD about 5-6 years ago. I told them something was wrong – that while Fibromyalgia is a valid and nasty diagnosis on its own, that my gut knew I had something more. Because my ANA panels always came back clear they just ignored my steady decline and eventual “fall off the cliff” about 2-3 years ago.

So when my new doc says she believes I have “something called…Mixed Connective Tissue Disease…” as if it were a foreign language, I laughed. Then I got angry. Then, I found joy and thankfulness that I was validated and can now move forward with a more focused approach.

It’s a sad reality that we have to be our own biggest advocate, but trust yourself. You know your body better than anyone.

The joys of chronic, invisible illness!

Filling the Gap | Electric Experience

chronicwhispers

November 13th, 2019 | Based on @chronic_whispers Instagram Post

Today it felt as if I was electrocuted while getting my blood drawn.

As I posted earlier, my appointment today was very positive. But I left out the story of my one-of-a-kind blood draw.

When the nurse came in to draw blood I warned her that my veins in my inner elbow are no longer viable after my years of regular lab tests. For the past 2-3 years I’ve only had draws from my hands as a result. She was convinced she was different and that she could do it, refusing my hand. I was being nice and told her that maybe it would work since I hadn’t had blood drawn in a year. (Fully convinced she would try, fail, and move to my hand anyway.)

She stuck me in the left arm and it didn’t really flow. I reminded her that they’ve been out of commission, but she said she was in and could feel the wall of the vein. She then must have moved the needle again in an attempt to get it flowing.

But, the next thing I know, I felt as if I had been electrocuted. Intense electrical like nerve pain shot down my arm and into my thumb and thumb pad area. My arm, involuntarily, spasmed/convulsed/jumped/flailed as a result of the sensation. It was SO intense and hurt bad!

I don’t remember seeing it (I usually look away until it is fully set and blood is flowing), but my dad was with me and he said it was pretty dramatic movement. I think it gave all three of us quite the scare. Dad said the nurse seemed extremely shocked/scared. We were all amazed the needle didn’t get ripped out it was so bad.

But it was moved enough that it was now off the nerve. I said again that this spot is not working and we need to get it out. Apparently determined, she then moved the needle again and I gasped and tried not to move as I panickly told her the electric nerve pain was now in my three fingers – primarily in my ring finger. Finally it was off again and she said that she lost the vein because I jumped so we will try somewhere else. “Because I jumped…”…yeah, because you hit a nerve!

I was surprisingly patient and kind with her – I think I was in “shock” – and, against better sense, let her try again on my right arm. This time with much better results.

So, have you ever been “electrocuted” during a blood draw?

Filling the Gap | First Visit

chronicwhispers

November 13th, 2019 | Based on @chronic_whispers Instagram Post

I visited the doctor for the first time in a year today and it went well!

I went prepared with a notebook containing a lot of my medical history. This place had none of my records so I wanted to make it as easy as possible for them to understand my current state of affairs. She was impressed and found it helpful.

She wrote scripts for everything I needed. (She even said she could get me assistance for one that was way beyond my budget so I can take it again.) She took blood-work, ordered an x-ray for my injured elbow, and a brain MRI to pick up where my Neurologist left off over a year ago. So, great first visit!

Filling the Gap | It’s Been a Year

chronicwhispers

November 11th, 2019 | Based on @chronic_whispers Instagram Post

On Wednesday I will visit a doctor for the first time in a year. Unbelievable, right? How do you survive a chronic illness without regular doctor visits? Well, not very well. But, when the finances aren’t available you just carry on as well as you can.

I was pretty over doctors a year ago. I had reached the point where my PCP, Rheumatologist, and Neurologist had given up. I was getting brushed off, laughed at, ignored, getting eye rolls and more when I asked about different things. I think my emotional and mental health needed a break from these people that were supposed to be helping me with my physical health.

My financial situation hasn’t changed much, but I found a place that offers care based on financial need. I’m not going to get top care from specialists, but at least maybe I can get my medication back in order with updated prescriptions. And, I think there is always a chance for finding more answers when new eyes view information.

I’m trying to get my medical binder finally finished before my appointment. (I have all the info, it’s just not all printed and in the physical binder.) I want to make it as easy as possible for a new doctor to see my journey. I’ve documented or collected all the basic information as well as charting and having all lab results, visit summaries, etc. But, there is still the anxiety of the whole process, so here’s praying this will be an answer to many prayers over the past year.

Filling the Gap | But God IS

chronicwhispers

November 7th, 2019 | Based on @chronic_whispers Instagram Post

“BUT GOD IS”

Praise the Lord that He IS! My flesh is weak and broken, BUT GOD IS is my strength. My heart too often fails his, BUT GOD IS right there – waiting in his perfect love and grace for both now and eternity.

Right now I’m in a difficult season of my life and I honestly don’t know if I will ever find a higher baseline, BUT GOD IS bigger than it all. He can handle it. He can handle me…the sadness, anger, pain, and tears. He doesn’t just “handle” me, though. GOD IS overwhelmed by a love for me – for you – that will sustain even in the darkest moments. I may not as quickly open my eyes and heart to his presence in those dark places, BUT GOD IS still sitting right there with me in those times as well. And not just once, but forever. I crave that forever with Him tonight. I crave his presence and a renewed strength of heart in Him.

Not everyday is good, BUT GOD IS!

Filling the Gap | Seeking My Place

chronicwhispers

November 5th, 2019 | Based on @chronic_whispers Instagram Post

Today was my birthday. I have officially survived 39 entire years on this planet. Go me!

But birthdays, like New Year’s, make you take inventory. Reflecting on the past year and wishes for the one ahead.

Years ago I had a vision of life at 40…I would be so “old” by then and fully settled into my place in this world. I expected to be married, with kids, and working full-time inside or outside the home. I bought my first home all on my own when I was 29…white picket fence and all. I hadn’t met my soul mate yet, but figured he was just around the next corner.

But shortly after buying my house, my illness first truly hit. In the ten years since, I sold my house and moved back to my hometown. My health took a nose dive and I lost my ability to work full-time. I was forced to start using mobility aides and become more dependent than I ever dreamed of being at this point in my life.

Now I’m one year away from 40 and making wishes for the coming year is hard. I have yet to truly find my place, nor my purpose, in this world (as someone with a chronic illness). I’m a Jesus follower and trust His heart for me. I find my strength in Him alone. I refuse to believe he is done with me yet. (Though I’ve had my moments.) For now, I will just do my best to keep seeking Him and seeking the place He has for me in this world.

Filling the Gap | A Crossroad

chronicwhispers

October 3rd, 2019 | Based on @chronic_whispers Instagram Post

You know when you are there. You try to ignore the warning signs and push through. But it always catches up with you and you find yourself at the crossroads of Crashing and Life.

It’s then you have to face a decision. You can try to take the path of life – of continuing to push past even the brightest of neon signs. But you will end up right back here in even worse shape than before. Or, you can come face to face with reality and accept the crash.

I’ve been pushing through the signs for months. I’ve been trying to ignore the impending crash and force myself down the road of life. If you could have seen me the past 2-3 weeks, you would agree I made the wrong choice. It was the hottest of hot messes, people! It was an excruciating fight that was impacting way too many people. It was very evident that I was falling apart in every way possible…physically, cognitively, emotionally, and spiritually.

So, as I said before, when you do that, you always end up back here faced with the reality. And that’s where I am. I’m in crash mode. My body is now making the choice for me because I didn’t make the best choice for it earlier. It was a struggle to accept, but after much prayer and reflection I realized I have to give my body what it needs.

So, I have talked to the appropriate people and will be starting a month-long break from life as it has been the past 6 months. I will be focusing on giving my body the rest it needs. I will try to avoid emotional stressors and over-stimulation of my brain. And finally, I will focus on just being with Jesus and remembering that He is where I find my identity, strength, and peace.

Reality is, Self-Care is vital for me to remain here.

Filling the Gap | Grief

chronicwhispers

September 28th, 2019 | Based on @chronic_whispers Instagram Post

I know it’s because my heart is broken. I know it’s because I’ve been crying for 3 days straight. I know it’s because sleep has been hard to come by. I know it’s because my mind is overwhelmed by the emotions. I know it’s because I had to say goodbye to my best friend.

But right now I’m just so done. I’m tired and I don’t have the energy to fight. I just want to stay in bed and sleep for a few months. My capacity for life is limited to begin with and now everything is elevated. The pain and fatigue is worse. The emotions are, obviously, on edge. My cognitive function is…well, I can’t focus on anything that requires thinking.

I get it. It’s only been a day. I know it’s going to take time. I understand that stress can impact already existing physical conditions. I know, I know, I know.

But he was my baby. He was my best friend. We lived alone the first 5 years. He was who I came home to. He was who I talked to about my day. He was who I questioned with and cried to when I started getting unexplained symptoms that turned into chronic illness. He knew all my secrets, all my frustrations, all my fears. We understood each other when no one else did. And, even though it was the right thing, he’s now gone. But, he is also now pain-free.

I will move forward. My body will readjust. But for tonight, I still mourn as my heart continues to hurt and the tears continue to fall.

Filling the Gap | Bad News

chronicwhispers

September 26th, 2019 | Based on @chronic_whispers Instagram Post

This is my fur-baby. He is 12 years old, 11 of which I have been his momma. I’m not married and lived alone when I adopted him. I owned my own home 5 hrs away from my closest family and had limited friends in that city. He was sometimes my only friend.

Many life changes have happened since then – including me getting sick. And for the most part he was the only one who saw the tears and emotions flow as I began getting sicker and sicker. I didn’t know what was happening with my body, but I knew that his smiling face would always be waiting for me when I got home. And, he was a trooper when we had to pack up our home and move to “grandma and grandpa’s” house.

He has had a rough last few months with having teeth pulled, surgery for a torn ACL, and 6+ weeks of recovery from that. We were just beginning to get back to normal when we a growth started to change color, shape, and begin to ooze. Everyone was convinced it was cancer, but the lab results said it was clear. I became hopeful that now that it was removed he would begin to get better. But he didn’t. He just continued to decline and I knew something was wrong.

Today we got answers for Freckles. My gut knew I wouldn’t like it, but I’m thankful to know for sure. Having an actual answer and concrete proof of what he is dealing with allows me more peace in saying goodbye. So after over 10 years together, I will somehow have to say goodbye to my baby and best friend tomorrow. Please pray for me…he will be fine. I know this will relieve his pain. But me, I am crushed.

After we left the vet we got him some chicken nuggets and went to one of his favorite places, the lake. He can’t enjoy it much, but he did wade in for a little. It then took him three rest breaks to make it back to the car. I love this face and don’t know what I’ll do without my baby, this grumpy old man, anymore!

Filling the Gap | Cymbalta Withdrawal

chronicwhispers

September 5th, 2019 | Based on @chronic_whispers Instagram Post

3.5 Weeks off of Cymbalta.

It’s a debated drug, but it WORKED for me for 5+ years. The drug didn’t stop working, a series of other things did.

Changes at work + a continuous decline in my health = me leaving my full-time job. Add a year of unemployment and the savings account is depleted & I lose my health insurance.

Another several months pass and my prescription is getting ready to expire. So, with no insurance to revisit the expensive doctor you have to start thinking about what you are going to do next.

After reading multiple articles over the last couple of years on the long-term effects I decided to not go into further debt attempting to secure another script. I decided to wean off it.

3.5 weeks later and the pain…oh the pain! I’ve been on it so long I almost forgot how bad I was before. I don’t know if I can take this as my “normal.” I don’t know what to do.