Posted in Family, Health, Inspiration

Heaven can wait

Mom’s surgery went well and I learned that she appeared to be in good spirits. Thank you so much for all your prayers and for keeping us in your thoughts. I’m truly touched by your care and the messages, along with the kind comments that I have received and your understanding for my elusive nature as of lately. Much has happened and I feel as if my year ended up teetering on some scary moments. I am ok and I know I have called on you a lot lately. Change is happening fast in my little corner and 2018 will be full of it. I remain thankful for your support through those times and always. You truly are the best group of people I have encountered.

I don’t have more details about Mom. I have no idea which toe she lost, what is next or how long she has to stay. I’m not sure if there is still talk or danger about her losing her leg, but for now I remain hopeful. I have not been able to talk to her and hope this will change soon. I don’t see it unless she is coming home or decides to take a phone while in the hospital, but for now I hope to hear her voice soon. It has been hard not to wish her a merry Christmas or a happy new year. It’s been a first and sometimes you can’t have it all, they say. At least she is here and I feel her close in my heart. In a way it is the very thing that makes my heart heavy and forces tears down my face. I’m too far away and today the pressure of being scared is leaving my body in the form of such release.

Today the distance dissipates as I hold her hand to win this fight that we soon or later have to lose. Today I’m hoping for later….

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Posted in Family, Health

A prayer across the miles

On this last day of the year, all of my thoughts are traveling home, back to Germany, back to Mom. Mom has surgery today and she is losing another toe. And while everything could be a lot worse, for the moment at least it isn’t, although things could change tomorrow. For the moment I’m holding on to the silver lining that she is keeping her leg, while I silently pray that she is recognizing the seriousness of her conditions and that it will truly end with just a toe.

Posted in Chronic illness, Health

Red Pill – Blue Pill…my bout with RA

If you are just joining this story, you might need insight of how we got to this point. You can get up to speed, here, here and here before reading this. (In order of posts)

For the most part I left the rheumatologist office feeling high with an immense relief. No permanent joint damage was more news than I had expected to hear. As I said before, I think I prepared for the worst, and now I felt the burden falling off of me like a heavy weight that had forced me to my knees. There was a bounce in my step, a light footedness as I walked to the car and felt as if I was given a second chance at life. I looked to the heavens, winked at my guardian angel that must have worked overtime to protect me over all these years, and life was good at that moment. Life was very good and I couldn’t wait to share the news. One of the hardest things was not to tell you here on the blog, as I knew you needed the insight of how this all came to be first in order to understand.

The feeling lasted a few days until the insurance battle began and so said insurance didn’t want to cover medication X which was the pill form of the harsh drugs that were suppose to prevent the further damage, that mind you, never happened over the past eleven years. I had taken a few of the pills from the trial version the nurse practitioner had given me. The bottle was meant to hold me over until the refills kicked in and she had warned me that there might be problems filling the medication she had prescribed. I didn’t understand at the time, but know now that it is all about the money and the kick backs from the pharmaceutical companies. Two weeks later I received the notification from the pharmacy that medication X was not to be covered and that I needed to try medication Y first which were the syringe shots into the stomach or upper thigh. Only if I wouldn’t tolerate medication Y would there be a slight chance to switch back to medicationX regardless of that it worked for me already. I was to be put through the test to see if my body could handle it with little regard of the side effects. I wasn’t a fan at all and two appeals were filed from my doctor without success. Medication Y it would be or nothing at all.

Health wise I felt decent and I started to spread the pills out. First every other day and then in even bigger gaps. By now I haven’t taken any of medication X in probably 2-3 weeks, maybe even longer and I’m still holding. Medication Y was approved and the first shots arrived in November and another set of two just today. They come in a month long supply, one shot every two weeks. Both medications have about the same side effects such as cancers, heart failure, sudden death, infections, just to name a few, and believe me, the list goes on. I had already swallowed a few from medications X, but what got to me and did me in was the “Sharps container” that came with medication Y for the disposal of the syringes. The bio hazard warning on the box in-specific was what was especially disturbing to me. All I could visualize was that I was going to inject myself with bio hazardous waste. I know there is more to it, but I can’t go forward and at the moment the RA is back to being untreated.

I rescheduled my follow up appointment from December to February of next year and was hoping to have more clues by then. I’m not sure what’s ahead and if service might be denied completely since I’m not a good patient at this point and have gone against doctor’s orders. Luckily I am at a point where the pain levels are controllable, but what if it changes back again? I don’t really have the answers right now, I just know that the risks of the hardcore drugs to maybe remedy one problem are not worth to jeopardize so many other things. I feel with certainty that this is not my answer and I don’t care to slap a bandaid onto the symptoms. I want to treat the cause, but I understand that there is no money to be made off of me this way. So why would and should someone care? I’m not sure what the follow up visit will look like. One thing is different this winter, and it has been the least painful season ever since the onset of RA. The winters are usually worse and although there is still pain, it’s nowhere close to what I’m used to. I can’t help but wonder why this is. Am I just lucky and am I just catching a break? Have my prayers and yours been heard, or could it just maybe be that I’m starting to know enough about what I’m dealing with that there is a form of remission? That I’m putting some things into effect that are making a difference? I know it’s a big one, right….but I always said it “I’m a dreamer and without dreams there is no hope and without hope there are no miracles”. I believe that anything is possible…

Posted in Chronic illness, Health

Breath of life or kiss of death…

Just before Germany I watched an hour long infomercial about a natural product that was said to aid with rheumatoid arthritis. Natural is my preferred way of going to keep everything in balance with minimum disturbance to other things. Sixty dollars for a month supply, I had nothing to lose but everything to gain. I had never given up and now was a time I needed to believe more than ever. I ran out of options and the pain forced me to explore pretty much anything. This information came during a time when some people suggested that I start smoking opioids and that it would repair whatever was in need of repair. I signed up for the natural sixty dollar supplement that was said to treat RA instead of slapping a band aid on the symptoms. By now, I had taken over a bottle worth of this natural supplement in addition to the occasional steroid. I couldn’t tell what was helping and what was doing what. I only knew that I would prefer a natural approach and even smoking opioids to the hard core drugs that might keep my fingers from deforming, but brought other problems and my organs giving out. I visualized myself dying with perfectly straight fingers but with liver failure from the drugs. I saw the pain in my own eyes and a life that was reduced of all quality. It was in that moment that I decided that I would not contribute to this being my fate. If it would be, then it would be and I would deal with it later, but for right now I had a choice if I wanted to contribute. I choose not to…

It was a lot to take in during a short and very expensive specialist visit and my nurse practitioner prescribed a drug that would prevent the further damage that hadn’t happened within the past eleven years. But just in case it would, I would be prepared. I would have to look inward in the form of X-Rays, how else would I know if, and when damage was to start. Not good enough if you asked me. Let’s recap this, I was going to take hard core drugs to keep at bay the deformations that were not present and haven’t happened throughout my bouts with RA. I was also going to run the risk of ruining my organs for the sake of saving something that could potentially happen. I was going to interfere while trying to control fate. You gain something, you lose something right….the difference was I wasn’t willing to lose, but I couldn’t sever my new found relationship with my nurse practitioner either. Not yet anyways and I let her prescribe the pill version of what would block my symptoms and prevent damage should the disease decide to attack my joints in a new level. I even took a few when I felt that I was in need of a little help, when the joints got achy and when I feared that another flare would appear. Winter was approaching and the more painful period of the seasons was around the corner, although this year, I had battled the symptoms over the entire year and wasn’t blessed with a period of remission. I had lots to think about over the next couple of days to decide where the road would take me. For once I felt like I had an option again, an option I didn’t have as the pain was nagging each day. Now tolerable, I was happy and relieved with the news that I received at my visit. I left the office feeling like a huge burden was lifted and no additional bad news was delivered. There was no cancer as the ultimate culprit, or anything else was coming to the forefront of what I didn’t already know. I knew already that I have RA and no additional blow was delivered. What I didn’t know was the news about not having any joint damage and it was great and amazing news to hear. I was experiencing the natural high and relief of knowing and feeling blessed beyond means. I felt as if I was given another chance at life. Perhaps I could have known years ago, but somehow I still don’t feel that I’m in danger. Call it ignorant bliss, not knowing or whatever you might, there is a calm within me, a knowing that I have some say so in this and that I already know what needs to be done. My symptoms are the cries of my body, and the pain renders me still when I ignore the signs and continue to go on in the same old fashion. I left the office and felt that I was given another chance to listen to myself. I had another chance to get it right and perhaps it wasn’t too late yet. No permanent damage had taken place. Only I would decide when enough was to be enough. Breath of life or kiss of death, one of these days I would have to choose of what was to come next.

To be continued…

Posted in Chronic illness, Health

Shaped by pain

Pain shapes a woman into a warrior…

The follow up visit with the specialist was scheduled a few days after my return from Germany. The day was finally here and numerous thoughts about the outcome had tortured my soul. The ego was playing tricks on me and I had to remind myself that 90% of our troubles start with our thoughts. This one could easily get away from me, if I gave in to entertaining and contemplating these thoughts. I would lie if I said that I wasn’t nervous and afraid of what I deemed the final prognosis. Somehow I felt that this one would shed the final light, that it would bare the answers and that years of wondering while a chronic disease was going untreated would emerge from the darkness. I prepared the best I could, expecting the worse, but hoping for the best. It was out of my hands and more than ever, I had to believe, and muster faith. I felt prepared and calm as I was sitting in the small examination room, and I prayed as I was waiting for my nurse practitioner to enter.

The door finally opened and she entered the room saying hi. I immediately tried to scan her verbal and non verbal behavior for any clues, any hints that would prepare me for the words about to come out of her mouth. As if I couldn’t have waited another ten seconds, she was about to tell me and eliminate the guess work, but I tried to detect a vibe to prepare, to have a ten second advantage of what was to come. It was obvious how strong the tension of the unknowing had been, and it came to full realization of how it had developed over all these years and the burden that it brought. I was prepared to hear it, good or bad, it would be my truths and determine what was to come.

She first confirmed that I most definitely have RA and there was no mistaking about it, but we never talked about how wacky the results were. I remembered back to the first time around, when the initial rheumatologist made it a point to emphasize how much higher my results were compared to the normal, acceptable numbers. It was scary and I had no clue what that even meant. I still don’t know what the consequences are. Is there a faster downward spiral, do you have the disease in minor ranges or is it full blown? Was I going to demise much quicker than the next person, I’m not sure of what the prognosis was? I never knew and I still don’t, I don’t know if I need to know.

Next she confirmed that all other levels were within normal range. I didn’t know in detail what was all checked, but again I didn’t need to know. I was relieved and I was ok, what I didn’t know, would bring me no worries. This had been my motto for all these years, ignorant bliss, but I knew it was no longer true and I was here to get answers. This was not going away, not yet anyways and I had to educate myself more. So far, so good and things were moving along.

What came next, seemed to be the biggest surprise of all times as she looked at me with disbelief. The X-Rays of my hands and wrists revealed NO joint damage SO FAR. I’m saying so far because anything can change at any given moment, but it seemed as if it was a miracle to her. For eleven years I had battled this ugly disease and I spoke about the excruciating pains, and the times of remission in my prior post HERE. She could hardly believe it, as I surely should have some sort of damage as a result from this disease. Was I a medical miracle, it sure felt like it from her reaction. The X-Rays revealed no damage and a few little bumps on my pinky fingers were dismissed to inflammation and hardened calcium from the white blood cells trying to repair the joint. They had been there for some time now, getting worse with physical work and at times they were feeling stiff.

Clue number 1: Too much physical work.

Surely it was the onset of my fingers deforming and I thought that the crippling disease was ready to kick it up to the next level. Once again, the ego was spinning a story fit to provide misery without fail, but now I knew the truth about these little bumps and the other thing I know, is that the ego is no friend of ours. The bottom line was that there was no damage and it was the biggest news of the day. Further she discussed treatment options with me and we had arrived at the point of a prescription. Chemically altered drugs that would suppress the symptoms and keep the pain levels at bay. The thing I didn’t want to do the begin with, and the thing that had left me no choice but to seek medical attention in the first place. It was the pain levels that became intolerable and why I went to seek her help. I didn’t know how to function and do my job any longer, but I was feeling pretty good these days and the prednisone had done it’s trick or had it?

To be continued….

Posted in Chronic illness, Health

A future in the balance

It’s been roughly eleven years that I have been diagnosed with RA. I have experienced many flares that bring excruciating pain and I have been rendered nearly unable to function in today’s day to day life. But, I have also been blessed with times of remission, and nearly pain free periods. Those are the days when I give special thanks and where I’m grateful and in tune with my surroundings on a different level. I already am, but even more-so then and those days become a precious gift.

The pain never goes away completely, but after a bout of flares, the remission periods of little pain become much more tolerable. It is usually the winters that are tougher, and I have frequently referred to myself as the human barometer. I can pick up on approaching storms, and the pressure changes make my bones heavy and ache. At times I know before the meteorologists know. I feel clumsy on those days and everything takes more effort. After winter, a period of relief usually follows, but this was not the case this year.

Winter came to an end earlier this year, but the symptoms remained and never dissipated. The only difference was varying degrees of intensity, but the nagging pain remained. Life changed for me at a faster pace this year. I was reevaluating my truths and everything I have come to know in my journey. Not really a bad thing and again I realize that it was adversity and pain that stretched me into my higher self as a person. I now recognize those patterns and by knowing that the outcome is always something beautiful and greater if you carry hope and belief within your heart, I have learned to embrace the pain. But I also learned to understand how someone becomes depressed or gives up all together, not wanting, or unable to face another day filled with pain, be it physical or psychological. It was difficult to function and even more difficult to make it through a day at work. Minutes turned into hours of agonizing pain and even hiking became a challenge for longer distances. I didn’t trust myself and my footing was unstable and frail on the trail. I had no choice and requested a referral to a rheumatologist. After a few troubles and denials, I was finally accepted by a local praxis. Yippie…right, but now is probably a good time to remind you that I have little belief and faith in doctors these days and that my first rheumatologist placed me on cancer medicine without my knowledge, that depleted almost all of my white blood cell count. A common could have killed me without me knowing it. Needless to say I never went back and have been on my own ever since, going through life with a chronic illness untreated.

My September trip to Germany was around the corner and I was in so much pain. I had no idea of how to make the strenuous journey, handle the luggage and the stress of the trip without triggering an even bigger flare. I had to take charge and off to the new doctor I went just before the trip. I saw a nurse practitioner and I liked her a lot. She took the time, she listened and still had a genuine desire to help vs. being consumed by pharmacy kick back of prescribing pills and seeing her patients as a number and dollar sign. She wanted to be sure of what she was dealing with and a barrage of blood tests in the excess of over 1000.00 dollars was ordered. In addition there were X-Rays of my hands and wrists. I told her of my fear of the upcoming trip and she offered steroids I could take as needed in order to have some quality of life, manage the stresses of the trip and be able to function while in Germany. I knew I had no choice, despite my pill dislike and later that day I filled a prescription for Prednisone. Over the next few days it would diminish the edge of the pain, making it tolerable and I left for Germany. Prior to leaving, we scheduled a follow up appointment to go over the blood work and the X-Rays. I wondered about the results while I was in Germany and I knew it was time to face the truth. I was wondering if RA was the only info she would confirm or if a truth would follow that I wasn’t even aware of yet. I tried not to think of it too much and I surrendered. It was out of my hands and I had to be ok with whatever was coming my way. If I needed to believe more than ever, then now was the time to do so. Regardless of the news, it would be from there that a treatment plan would follow, where a decision might be required, where I find out where the path was leading and where I discover what was on the other of the hill that I was clawing my way up to.

Posted in Health

10,000 Steps

Research says that we should average 10,000 steps per day to stay in the active category.

Under 5,000 steps per day is a indicator of being inactive. It’s a tell, tell sign that you sit too much which raises health risks.

5,000 to 7,499 steps per day stand for low activity which is typical our daily routine without any exercise or sports. The average American walks between 5,900 to 6,900 steps per day, putting the majority of us into the low active category.

Somewhat active starts at 7,500 to 9,999 steps per day and one step can make all the difference between somewhat active to active. So push on and take that extra one step to reach 10,000 😉.

10,000 steps per day indicates the point that should be used to classify individuals as active. This makes it a good daily goal for healthy people who want to get their daily exercise.

10,000 steps may be difficult for people with chronic diseases and tonight my feet are crying while the aches don’t stop. It does put things into perspective of what I can, and can no longer do, but I also know that anything can change at any given moment. For better or for the worse, and as always I’m sticking with the first part. I still believe that I can, and need to make some lifestyle changes. There are still a few stars left to change, and only then will the decision fall. Only then can I reach conclusions, and only then can I accept whatever verdict will become my truths.

For tonight my feet are up and I am surely done walking. This was my activity for today and “yikes” I didn’t even have my phone on me at all times. I’ve been everywhere bane nowhere today…

Have you ever counted how many steps you average per day?

Posted in Health

Down-time

Besides walking around with a chronic illness, I don’t get sick very often. Despite of it, something was off yesterday and my body was fighting to stay healthy. Shortly after getting to work, I felt clammy, which changed into alternating hot and cold flashes, but mostly left me feeling nauseous and dizzy. There was pressure in my head and I couldn’t focus throughout the achynejss. Maybe I’m getting allergic to work these days ha, I just couldn’t shake the feeling. Minutes felt like hours, and you get what I mean when you have to work through misery. I’m sure we all had to do it a time or two. Taking the advice I would give someone else, I drank lots of fluids in the hopes to flush out, or at least dilute whatever little monster had taken over to play havoc inside my body. Nothing really helped, and the urge to vomit remained. I considered it but didn’t want to kneel down in a public restroom and you get the idea without me having to gross you out even more. Luckily I didn’t had to do it. Three hours later into the fight and with three more days ahead of me, plus a closing shift that I can’t miss, I figured it was better to leave and try to get well, vs. fighting through it or making it worse. Everyone was already steering clear of me, avoiding me, or otherwise making it clear that they didn’t care to get sick. I didn’t blame anyone and tried to keep my distance while not breathing into their direction.

We had big storms yesterday and on the way home I passed several semi trucks that had flipped over and were blown off the road. Many cars struggled driving in the high winds, especially the high profile ones. Sudden swerves from wind gusts were common and I stayed back or hurried to get past them. I didn’t care for the headline ” Wild spirit crushed by tipped over semi truck” and I stayed alert. Driving conditions were intense and I couldn’t wait to be home. Finally in my neighborhood, it appeared that several neighbors lost parts of their Christmas decorations. Items shifted from prior noted spots and some big inflatables and other outdoor trinkets were missing. The first thing I noticed getting home was that the garage door opener didn’t work and I had to park in the driveway. By now it had started to rain and it was pouring hard. The wind was swooping the rain sideways, hitting me in the face as if someone just emptied a bucket full of it. Shower anyone – check. The winds had moved the cast iron umbrella stand, the umbrella and the patio table inches from teetering off the patio edge. The chairs had relocated as well and I wasn’t surprised of the power these winds created, given they could push over a loaded semi truck. There was no power inside the house which explained why the garage door opener didn’t work, and I decided to take a quick shower. The real thing this time, with warm water to wash away the ill, before the hot water ran out. Who knew when, and if the power would return. I was grateful to be home, being able to rest. I ate little yesterday but some Emergen-C and hot tea made my feel better in the evening and allowed me to stand taller once again. I’m not a 100%. but another day has broken with the opportunity to do it all over again and to make another dollar, ha. Wishing everyone a beautiful Monday and a great start to a new week. Take care of yourself and stay well. Don’t forget to take a little time to be good to yourself….you deserve it.

Xoxoxo 🦋💙

Posted in Chronic illness, Health

Could it be?

If you have followed me for some time, you know that I don’t buy into mass belief and the conventional ways that often dilute our very existence. Today, many days pass with me listening closer to my gut feeling, a hunch and an intuition that comes out of nowhere, or the signs my body is trying to tell me. I pause to listen and try my best to never get too busy again to ignore these signs.

Here is a movie trailer from E-Motion that my friend Gisela sent me. It speaks to every fiber of my existence.  I know it is the answer for me and it might be for you as well. It’s definitely worth checking out and the full movie is free over the weekend. I think more people need to see this and it needs to be paid forward. You might find a few answers, perhaps even alternate choices we all should have when it comes to being the directors of our own lives and having a say so.

Enjoy….

Posted in Health, Inspiration

No pain, all gain 

I have a quick turn around today and have to be back to work in 9 hours. I remember back to my childhood, and I can hear my Mother saying that I would have to sleep extra fast to cram all the sleep needed into a shorter time period. This was her response anytime that we had to get up super early, or if for some reason we would lack a good night sleep due to staying up too late. That happened quite often as we are both night owls. I’m having one of these nights and I will sleep little tonight, but I feel good and today was a great day. This post will be scheduled for the morning, but I couldn’t go to sleep without highlighting a marvelous day. In general I always try to have good days, but today I realized just how difficult this has been for me lately. It became apparent how challenging times have become with the chronic nagging pain of the RA (Rheumatoid Arthritis). Occasional flare ups turned into a constant flare up. A new way of life for me which tries to chip away at your positive outlook day after day. I’m still winning though….Today was special and there was no pain to fight through. I would even describe it as feeling normal, something I almost didn’t remember how it felt. Side note: I have noticed that I always feel better after my days off and I have come to the conclusion that I just need to retire haha. Maybe it’s time for that school bus. But back to today, there were no teeth to grit and for once my day didn’t feel like a challenge. It’s been a while. My spirit was instantly lifted as I moved with ease through my tasks. Yes I’m tired by the end of the day, but it was a much needed break and an amazing feeling to be pain free. It made me ponder and realize how much we take things for granted. It isn’t until something hurts or is not working properly anymore that we notice how hard our body works for us each day. How blessed we are if we have our health, and I know that some of you would agree if I say that without it we have nothing. My fingers are crossed for another smooth day tomorrow. I’ve charged the big guy today, my professional camera and I’m going to take some pictures with a friend after work. I’m looking forward to bouncing some collaborative ideas off each other, while having some fun. I’m pretty sure you will see a few of these examples in the near future. Tomorrow will be a long day and I will answer your comments and read your blogs over the next two days. Fingers crossed there will be no pain but everything to gain once more…

XO 💙🦋