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….

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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 💙🦋

Posted in Health, Life

Lazy Day 

I’m working split days this week, due to a dentist appointment today and my birthday on Thursday. My birthday smile is sparkling, even though my birthday had nothing to do with my teeth cleaning. It’s just one more thing that was on the agenda and that is done. I even got to wear civilian clothing today besides the work uniform or hiking attire you usually find me in on my day off. I got to get dressy for the dentist, whoohooo and sometimes I miss wearing the nice clothes that are just hanging out in my closet without seeing any daylight.The rest of the day floated lazily through the afternoon with little to no accomplishments as far as getting things done. My mom’s birthday is tomorrow and I’m late sending her gift, while I still have not finalized all the pieces I want to send, nor have I packed them. I feel guilty and I don’t remember, ever being so consumed by work with so little free time that it has left me feeling so drained and tired. I’m sure aging has to have something to do with it, and sometimes I think that all the years of physical hard work, are finally taking their toll and breaking me down. My body just can’t recover the way it used to anymore. I guess I’m no spring chicken anymore and in a few days I’ll add another year. Time for that school bus, sell everything and relax a bit. Smoke a little for medicinal purposes to find my own truths, while I hear it more and more that it is suppose to help with the chronic pain of this disease. Did I mention that a homeless man gave me a joint yesterday to help with the pain of the RA (Rheumatoid arthritis)? I do know him and I’m one of the few people who take the time to talk him. He is a kind soul and behind the visual appearance and the judgement of many, there lies a story that most don’t know. A story of a family and a wife that passed away, a story of this not being the first time that he provided for others, and a story that he might have not chosen this type of life, but that it is what life has dealt him. In the end, we all have a story and some are prettier then others. Some can be controlled while others are dealt from fate and everything can change in an instant. I was pretty taken by his kindness, having nothing himself, yet wanting to help me, me who lives in a house, has an income and is obviously better off than him. Maybe in some ways, but not health-wise and perhaps it was what he sensed, seeing the only way he could help me, selflessly and giving. Well when it comes to the bus and the weed, I guess I’m not quite there yet, but that doesn’t mean that it isn’t on my mind. The pain is usually worse in the wintertime and I’m not sure how much worse I can endure as I already struggle and hope it is just a flare with better days ahead. It’s something to consider though and if I had to choose between the cancer meds that depleted my white blood cells without my knowledge, that was given to me as treatment for my initial bout with RA and smoking here and there, I think I know which one I would choose the second time around. 

Today felt more like a repeat of last week, not feeling all that great, being tired, abandoned by my energy and still dealing with the flare up. I feel weak, exhausted and all I want to do is rest and nap. After the dentist I gave a haircut and stopped by the little park to feed the geese. I had fun and it’s often the littlest of things that bring me the greatest joy. From there it was off to the phone store in the hopes of upgrading the mobile, but after a bad experience with “Eddie no money”, a nickname we gave him afterwards, we left empty handed. Eddie was his real name but after deciding to not give him any of our money and pursue further business with him, well that’s where the name came in. Did I mention already that I get delirious when I’m tired, but Eddie was well deserving of this name. He was careless, impersonal, cold, inpatient, fidgety and arrogant. Charged us for the wrong phone and seemed visibly upset that we didn’t want to settle for the wrong phone. Well that was that and besides some education on features and specs, like I said we left empty handed with time wasted and nothing to show for. Oh well….at least we know exactly what we want now which should make for a quick transaction when the time is right to see another, more personable salesperson.  

It’s been an interesting week to say the least and there was another dragonfly sighting today. Perhaps it is time for that next oracle card. 

Posted in Health, Inspiration

Muscle Relaxer Therapy

I’m not much of a pill popper and I would rather heal everything the natural route. Sometimes that’s just not optional. Tonight is one of those nights and what started two days ago with the feel of my right shoulder being a little sore, has escalated into severe pain. Initially I thought that perhaps I slept funny, but this was not the case and it was only the onset of much worse to come.Today, I know that somehow I dislocated my shoulder and the bone of the normally round shoulder blade looks lime it shouldn’t. Desite my high tolerance for pain, this one is painful. The ice pack is resting in the my shoulder and I hope it will freeze the pain into submission. I took a muscle relaxer, as everything is starting to tense and I can barely write and keep my eyes open. Nothing has really helped so far and my fingers are crossed for tomorrow and working the whole day. 

Have a beautiful Memorial Day weekend everyone. Hugs xo 💙

Posted in Health, Inspiration

A is apparently for Allergies


Beautiful isn’t it? Don’t be fooled it’s not innocent at all and makes you sneeze and wheeze. 
My introduction to allergies started a few years back. I didn’t realized how blessed I was until then. Unaware and blissfully I had lived my days and didn’t realized how good I had it. Until that one early summer day as everything started with itchy eyes that brought such great discomfort that I felt like clawing them out. This resulted in an allergic pink eye, not contagious but very uncomfortable and no joke. Ever since, I deal with flu like symptoms such as congestion, stuffy nose, itchy eyes and ears and swelling in the throat all year around. At the same time and in addition to my outdoor allergies, I also developed a few food allergies that trigger and increase a few of my symptoms. I learned to adapt. I thought so at least and I have an Eppi pen I really should learn how to use in case if an emergency.After embracing the gray/silver hair choice the other day, I prepared to lighten my hair naturally. Chamomile, lemon mixture soaked hair, I went outside to let the sun speed up the process. Here I sit in the patio chair, the sun is shining strong and all I can do is nothing. It’s so bright I have to squint and for sure I can’t do nothing on the iPad as I can’t even make out a screen or something remotely close to it. Probably from all the squinting I’m doing as my view gets very narrow, ha. Might as well do something and be productive right? A grant idea is born and I might as well rip out a few weeds that have taken on the shape of miniature bushes. Gee…

The half hour lightening process turns into over an hour because time flies when you are having fun right? Stuff and dust is flying everywhere, as I rake, yank, pull and push my way along. Finally, the fun slows down a bit as I feel parched and I desperately need water. Stuff is in my hair and who knows how it got there. Just don’t even ask, I’m done.

Four piles of raked up bushes later, I decide it’s time to stop. Without knowing what is going on, the damage is done already. My back gets a little sore from all the ripping and the extended bending, all while exerting myself and breathing in the pollen mixture that is working it’s way to making me miserable. Nothing too bad….yet, I’m still unaware. Awhile later the right eye starts to swell up and my hearing gets funky. Everything is emphasized with an echo and I actually hear you better if you whisper to me instead of talking normal which sounds a lot like screeching. The eye gets worse over the course of the next day and it is crusted shut by the next morning. An abundance of allergy eye drops and pills saves the day enough so I can function and go to work but I can’t hear what you are saying on the phone and it’s so noisy for me out her. Fingers crossed this passes soon. 

Somebody at work told me that they got a shot for allergies and maybe I should check into it. Anybody else suffering from allergies? 

Posted in Experience, Health, Inspiration, My story

Feeling better….

The hot water was running over my backside, loosening my sore muscles as I stood motionless in the oversized shower that could easily accommodate two. As always, I was the only visitor and I was alone. A steamy, hot occasion due to hot water and not much else, but nevertheless covering the bathroom in a mysterious shroud, a veil of fog and dewy humidity. Standing there, head down, facing the large shower head, I closed my eyes and allowed time to stand still. I didn’t think of anything. My back was slightly arched, one leg extended straight and the other one bent at the knee, causing my hip to shift to one side. My hands, as if I was reaching to the heavens were planted just above my shoulders and found their way pressed against the tile in front of me. Fingers spread apart to grip as much heaven as possible. There I was, standing in silence with nothing more than the water splashing against my naked body, as if I was to find strength in that moment and rinse my soul anew. To take away the stresses that had entered my life while breaking me down and allowing sickness to creep it’s ugly head into my life. A few minutes went by until the water started to run cooler, calling me back to reality. It was also the moment that I allowed thoughts back into my mind and you might find this statement strange. As far as I know, most people would probably agree that their mind is always busy and that they never stop thinking about something. That the voice inside their head never subside, and that there is a presence, a disruption, a distraction which I simple refer to as the “Noise” of our lives. I envision it like the TV channel that has gone off the air, displaying a black and white screen of nothing, with a noise vibration as if you didn’t quiet tune into the station a 100%. 

I’m not sure when and how, but somehow I learned to stop and escape my own noise, to find myself in calm and peaceful surroundings while stopping time and float weightlessly. Perhaps it’s a form of meditation, of way letting go, giving up any resistance, a time that is to be enjoyed, worry free by experiencing the current moment, the “Now”. A moment that knows no worries about the future and has no regrets about the passed, it’s a time of just letting it all unfold the way it’s meant to be. I felt at ease as I was reflecting back to the end of 2016 and the beginning of a New Year. The holidays had come and gone for me without much significance. I spent them away from my family, the people I loved and sadly in the end I just wanted the hectic to be over with. Working in retail finally managed to catch up with me and despite resting as much as possible during this crazy, mad, daily shoppers attack, it wore me down and I ended up getting sick the morning of Christmas Eve. In true trooper fashion, I had almost made it to the end, almost….but 2016 had other plans and wasn’t quiet finished with me yet, or so it seemed. But still….I was at peace. 

I woke up Christmas Eve to a spinning room and it felt all too familiar. It wasn’t too long ago that I had experienced this once before. The spinning wasn’t as violent with the first time being far worse, but it was still enough to leave me lightheaded and nauseous for the remainder of the day. With a pressing headache and feeling off balance, I’m not sure how I managed to work the entire day, but I did. In the evening I got worse, slept through Christmas Day and was down for nearly five days before I regained enough cognitive skills to be able to function and go back to work. The initial spinning was worse during the first time but the recovery period was a lot faster than the second time with the symptoms only lasting for that day. The diagnosis at the doctors office was Vertigo, stemming from an inner ear problem such an infection or “Chrystal’s” being out of place. I never heard of such a thing (Chrystal’s in your ear) but quickly learned how miserable these symptoms can leave you feeling. I was sensitive to noise, people talking too loud and I can now imagine how people must feel that suffer frequently from migraines. 

This is my first post since December 23rd and please know that you all, my wordpress family have been sorely missed. I thank you for reaching out to me, for your kind words and for missing my presence. I hope that I can return to regular postings as the headaches are getting better and I fight myself back to the characteristics of my favorite animal, the bear. 

Strong, wild and free. (But most of all feeling tons better) Grrrrr…..