Posted in Chronic illness, Health, Life

A good day

A little over a month has passed since I got back to the states. The intention was to clean up my life of 30 some years, to get rid of unnecessary stuff in the house, and to lighten my load by becoming a minimalist. I managed to straighten up the sitting room (picture), but much more stuff has to go. And it’s only one room for crying out loud. The goals haven’t faded away, but life had different plans for me, some of which I frankly don’t understand yet. The pain amplified since Germany, and many day to day tasks became a real challenge. I can only comprehend it as my body having enough of battle mode, and rendering me almost helpless in an order to heal. Sometimes we don’t realize how long we have been strong, and faithfully our body carries us through those tough times until we no longer have to. Often it is too late, and the damage is done, revealing it’s ugly results to us at a later time. I really think that something like that has happened to me. I didn’t realize how much I gave, not that I could have ever changed it. It was necessary and something I had to go through, but now afterwards, it’s also something to consider for the future. Stress is a strange animal, one not to be taken lightly, and definitely not to be underestimated. And it is something not new to me, something I have experienced before.

After getting back, I was in so much pain that it hurt to move. Well heck, it hurt to sit and there was no way to get comfortable any which way. It was awful and it chipped away at my warrior spirit. It took me 30 minutes just to get dressed. Doing my hair or make up was a joke and like a zombie, definitely the speed of one, I faced each day. I learned that I had to push through the pain by movement to get better, and I did. It was tough to say the least, but soon I noticed that I always felt better when I pushed myself vs. trying to take it easy and rest. It was a delicate balance of pushing beyond the struggle and not overdoing it. I have a long ways to go, but for the most part I remember that it’s worth the fight. There are moments when I can’t, moments that scare me, but luckily these are getting more rare. There are times I am so tired of hurting, and it is then that I have to remember that I can call for help and that I create my own reality with my thoughts. Who knows why this is all happening, but I am sure that part of it is to help others, to tell the story of overcoming adversity, and to find a way to move on. Without a doubt, this has been one of the hardest things I NEVER had a choice of not doing.

Mom is doing well for the most part, but I know she is counting on me to return to take her out of the nursing home. It weighs heavily on me, and while I’d love to be her superhero to make this possible, there are more lives at stake that need to be considered. Explaining such to her is difficult, and ever so often her fears surface. I can only be understanding, even through the personal attacks and try to meet them with love, to the best of my ability. Honestly I don’t know what the solution is when it comes to her and her expectations of me to return to Germany. What to do with her house, as it should be rented out, but even just clearing the house of all that stuff. The apartment of Mom’s parents on the first level is fully intact and exactly how it was as they were alive. Their personal belongings and everything is there, and here am I, struggling with my own house and clearing one room. I don’t think I could move to Germany permanently, and I tried to find my way for ten month, making her a priority. It was hard and rewarding in many respects, and by no means would I want to change any of it, but it has also taken tolls that are taking me forever to overcome. To the point that I had doubts whether I could or not, that’s how bad it got.

But today was a good day, despite of coming down with a sore throat last night and a cold. I surrendered as I went to bed, unable to take on another thing health-wise, and I gave it all away. I asked the universe for help, I called my angels and my soul for help. I called the creator, my guides and helpers, as well as anything and anyone who could help. Amazingly I woke up with no pain and could do the stairs like a normal person instead limping one step at a time. A huge progress, I hope which is here to stay. I know each day is different and the good ones have been far too few in between, but I have to believe that all will be well. My throat is still sore but not as bad as last night and I’m hopeful.

Overall, today was a gift and I’m very grateful for the break. Here is to more days like this and to suffering less. To everything finding it’s way and that the universe reveals it’s plan soon. Whatever it might be, I will continue and try to give my worries away and trust the progress. What else is there…anyways.

Posted in Health, Life

Finding my way back from battle mode

Several month before leaving Germany, I really struggled with my health. So bad that at one point I saw a doctor who helped me a great deal. However the treatment and the results were temporary, and just a bandaid to mask the pain until more money would be invested in the research of pinpointing permanent corrections. I thought that the RA was acting up, but he said that this wasn’t the case. The culprit had to do with stress and super high inflammation and allergy levels. The medicine he gave me provided a little break, but eventually didn’t seem to have much affect anymore, or wore off. Both of my shoulders became super tense, and I couldn’t reach overhead anymore. It’s a real struggle to dress I tell you. It feels as if my limbs don’t belong to me anymore and movement is still very painful. Sleep was scarce and I could only lie down on my back since I couldn’t put any pressure on either shoulder. It was a tough order for someone not used to sleeping on their back.

This went on for weeks and I became sleep deprived. I would find myself fading while sitting with Mom, feeling so tired and worn out. It is well known that someone suffering a chronic illness needs much rest to recover and nurture their condition. It was non existent for me, and my body responded negatively. Yet I was in battle mode and it was my way of life to dedicate my time to Mom, and I did. In hindsight I remember a saying that sometimes we don’t realize how strong we are until being strong is all we have left. I had reached that point without realizing.

I spent Christmas Eve with Mom before leaving to the states the next day, Christmas Day. I would have liked to stay a few more days for the holidays but travel arrangements didn’t allow for such. After mediocre sleep for weeks, I found myself in a recliner chair the last night in Mom’s room. It was better than nothing, but I hardly slept at all. I was hurting worse the next morning while getting ready. So worse that in fact it distracted me from what was going on and having to say goodbye. My body had to perform and I had a long trip ahead of me, and somehow I was already worried and had some doubts. Falling flat on my face during the week didn’t help matters and left me bruised and sore on top of things. I still suffered from that and wasn’t healed.

It was a rather quick goodbye that morning, as I hugged Mom for the last time and I know that a part of my heart and soul stayed behind that day, seeing Mom cry because I was leaving. It was awful, but somehow I held it together. Shock and numbness and all, crying all my tears and tormenting myself, leading up to that very moment.

The journey back began with a car ride to the Frankfurt airport. Next, an 11 hour flight to Las Vegas. From there a 5 hour layover and 22 hours later all in all I had arrived, 5 hours away from my actual home. It felt like fighting my way back as I felt exhausted, overtired and overwhelmed. At one point I had doubts of making it all the way back, this is how bad it got for me on the health side. By now my wrists were giving me so much trouble that I could hardly pull my suitcase. I couldn’t pull myself up from the plane seat and I medicated myself more just to get by.

The next day at the ocean, I could tell that things were taking a further toll as I was unable to sit down and relax on the ground. I couldn’t use my hands to brace myself and I couldn’t just let myself fall. Little did I know that this was only the beginning. I struggled even more the next day and by the following day I could hardly walk. I couldn’t roll my ankles, stairs became an absolute nightmare and it was as if my body finally gave out. I no longer had to be strong in the sense of being around Mom, so my body finally showed me what was masked in all this time leading up until now. I didn’t know how to walk, and I didn’t know how to sit. How to be comfortable and how to do anything. I nearly lost it in the grocery store, filled with so much sadness and freight at the same time. I missed Mom, and yet what was going on with myself was no picnic either.

I waited until Sunday to drive my car and it was nearly impossible to shift and steer with the shoulder and the pain. It was no fun at all, and definitely not how I had envisioned driving my car for the first time again. Yesterday I went out for the first time, but ended up sitting in the car most of the time. I couldn’t hike and I couldn’t even walk on level ground. My knees were locked and it felt as if I had to learn to walk all over again. Today is a little better and I am getting more and more mobility again. I grit my teeth and fight through the pain of it and it has been scary at times, but I’m doing it. There is no way that I could work like this and I am glad I gave myself time to ease into that chapter of my life again, although I’m not quite sure what I want to do. But by god I do need that time to get well now. I am trying to nurture myself with some of the things I haven’t been able to do in the past 10 month. I can see how much I have aged, and I’m fighting for that spark to return back into my tired eyes. It will be a challenge, but have I ever shy’d away from anything trying? I think not.

And again I apologize for not responding to your comments and well wishes. I was simply tired and overwhelmed but will be on track again in a few days and try to backtrack my way. Please know how much they have meant and how much they are appreciated. Thank you so much. Hugs.

I look back at this journey with a new level of respect, and it truly feels as if it nearly killed me. Yet it was the only way, and I would do it again if needed.

Picture: McWay Falls, Big Sur California

Posted in Health

Salt pool bliss

Have you ever been to a salt pool? It’s something that I have come to love and every first Wednesday of the month, I get to go with my great – great cousin (Mom’s cousin) Dana for a four hour bliss day to the salt pool.

It feels wonderful on my aching joints and it’s a treat and time away for me. I remember the very first time, walking into the salt lake. It’s a dome pool of which you can swim outside into the open. The water has the most salt content there and literally carries you. It’s impossible to go under and I learnt quick to balance myself. Now it is soothing and therapeutic to just float along. Weightlessly, without resistance and effort.

We always have the same ritual and half way through our visit enjoy a hot Hungarian Gulasch soup with a Radler (a beer mixed with lemonade). It’s always a great time, which I always look forward to. This time we even got to slowly paddle our way outside. It’s impossible to swim in saltwater, but it was amazing that the weather held out enough for us to do so. Pretty incredible for November I’d say.

Posted in Chronic illness, Health

Much, much better

I know that this post will make some genuine caring people feel a whole lot better, simply for the fact that I am doing much, much better, and I thank you from the bottom of my heart for all your concern and love.

I finally had a mostly decent day. I still got up several times last night just to move around, and the shoulder situation was still a little sore, but the day was mostly pain free. We will see what tonight brings.

My neck is not as tight anymore, and the warming pillow and muscle relaxers have helped improve that situation. I also cooked with fresh ginger yesterday, and cut a huge chunk into my meal. I wonder if that had something to do with it as well, since it’s said to help with inflammation. I may never know, but will continue doing so going forward. If that was the contributing force, then the difference has been a huge game changer. Perhaps it is from changing my diet to reduce the foods that have caused damage and pain in the past. Maybe the stars aligned, and the barometric pressure has settled down. Who knows, all I’m saying is that today felt like a gift.

My hands and fingers work effortlessly and I’m rid of the stiffness. For now. I even started to knit another pair of socks for Mom. I’m kind of scared to celebrate too much, but on the other hand I feel that it needs to be recognized and acknowledged. Isn’t it weird how we get conditioned to hold our breath, or not to say things too loud because we might jinx ourselves? Today, I will ignore this old wife’s tail and enjoy my moments. As well as share them with you….loudly. I will not whisper and I’ve been in so much pain that it becomes a huge deal when I receive a break. Who could ever hold their breath and not shout it from the highest mountain top?

Today, the thought crossed my mind that I’d probably be better off toting a little carry on piece of luggage with me when visiting Mom. 😉 Gee, the bag of goodies I bring along, is growing bigger and bigger all the time. There is a huge bootle of water, food for me and treats for Mom, especially on Saturdays when she only gets a basic little meal like soup and it leaves her yearning for more. I carry the sure favorites that bridge the gap, and bring a giant smile to her face. There are magazines, shopping bags, more treats…the sweet ones this time, knitting supplies, crafts, catalogs and other misc. stuff that adds up to a ton to carry. It dawned on me that perhaps my shoulders hurts from the heavy weight, kind of as if I’m pulling my arms out of its shoulder socket. That is how the pain feels when it gets bad. I would lie not to realize that the chronic pain is most likely relocating to surface in another spot. But not today, and today was a beautiful day. I’m not out of the woods, but today was long overdue. Thank you for all your prayers and thoughts. Your wishes and kindness throughout my struggles. Thank you for being YOU. You make everything better for me and I am blessed to have you in my life.

Posted in Chronic illness, Health


It was Tuesday and the day for my follow up in regards to my blood work. I really hadn’t thought much of it since that miraculous last Friday when all of a sudden I seemed to be healed almost instantly. Of course I wasn’t, but the pain was gone, and so were the troubling thoughts that had accompanied me through the pain. The painful reminders disappeared and life was good. Couldn’t it have stayed like this forever!!!

It was just before noon as I arrived at the doctors office and took a seat in the waiting room. It was a first in a long time that I rode the bicycle, and that I decided to get my exercise this way for the day. I would ride it to see Mom after I got done, and later ride it back home. It would be a workout, but I felt courageous and motivated, I was on a mission to a healthier life. The deciding factor was that I felt good enough to execute it, and God only knows that this wasn’t the first time that I attempted this mission. Many times before pain crippled me into stopping, and although I knew this, somehow I felt as if I had a chance, that this time was going to be different. You could call it being naive and gullible, I call it being hopeful and positive. Perhaps I was believing and hoping for another miracle.

It wasn’t long until the silence caught up with me in that little waiting room and I began to wonder. It became crystal clear, that the pain was subdued, but that didn’t mean by a long shot that all my troubles were over. What if something showed up within the blood-work? For sure there had to be something that caused me to hurt this badly. I’m not sure at what point it was that I considered additional things besides the RA to be the culprit. Was it perhaps the big C word that had shown up. Was I terminally ill and just didn’t know it yet! Through the years I’ve had visions about it. Im not sure why, but perhaps for the same way Dad always knew that he would die young. He couldn’t tell where and how he knew this from, he just knew. Was this going to be one of those conversations that started something like “I am terribly sorry…..but…”?

The past weeks and month caught up with me. All the thoughts about death that I had, not necessarily in regards to my own or Mom’s, but for some reason death would always find a way back into my mind. Not because I was afraid of it, but I think in a way it was fear, fear of running out of time, of not finishing my mission, my life’s work. And what about “Black Eyes”, a vision of myself I had seen walk past me with blacked out eyes? Were these all messages I didn’t really care to see, did I put them out of sight subconsciously because I wasn’t ready to deal with them? I knew that in a way I did, because I didn’t want to put these thoughts out into the universe and manifest my truths. Before I could do anymore damage, I remembered that thought and became aware of what my mind was doing to me. It was leading me down to The Valley of Loss, the swamps of torture and the inclines of misery. I focused my thoughts and silently said a little invocation that I was going to be ok. In my mind I spoke it out and stated my intentions, finishing it with “So mote it be”. Nothing bad was going to happen to me. Shortly after the door opened and I got called into the examining room. The doctor entered shortly after and said my labs weren’t “ALL” that terribly bad. What did that mean? Was there good news with the bad news? Which one would I like to hear first? And here I went again and the ego of my mind tried to get the upper hand once more. He asked if I knew about allergies and what I was allergic to. Besides Soy, Wheat and Peanuts I had no clue. My blood work revealed that three things were off the chart for me.

Allergies…normal range is between 0.00-100.00 mine was at 611

Inflammation…normal range is between 0.00-5.00 mine was at 8.4

Triglyceride…normal range is between 0.00-149 mine was at 306

The last one I’m least worried about and with a healthier diet, mainly vegetarian, lots of water and a few other things, this should impact pretty quickly.

The allergies are six times the normal acceptable count and I have no idea. I guess I would have to do an allergy test at some point to find out. Strange thing is that I have no symptoms. No scratchy throat, no itchy eyes, no nothing. I would imagine that the high allergy count is impacting the inflammation in my body. So allergies seems to be my number one battle to tackle at the moment but I can’t do the testing without insurance right now. So instead I’m hoping that a change occurs through changing my eating habits. I’m not sure how I’m going to measure my success since I don’t have any allergy symptoms. Perhaps the only way I could know is in the amount of pain from the inflammation, perhaps the disease will go into remission and my body is calming down again.

I can tell the shot is wearing off and although my fingers are not swollen yet and I have full functions of making a fist etc, there has been more pain over the last two nights. It’s painful to turn around after I become still. Joints are stiffening again and it’s frightening. I’m trying to keep loose through movement during the day, diet, and hope that the pills can carry me over long enough to make a difference. But at night when all is still it’s a different story. I’m keeping hopeful ♥️

Posted in Adventure, Health, Hiking

Movement for life – Part I

I struggled on Monday, and what started out as a nice break for myself, would quickly turn into a day filled with pain. The RA has become a constant, and reminds me of how it all started some 12 years ago when I was reduced to barely being able to move, as if I was crippled. It seems that I have arrived back at that point and everything takes effort. The lack of exercise, spending most days sitting at Moms bedside doesn’t help, and physically the only thing it has brought me is extra pounds. I’m at a point where you can’t get comfortable, you don’t sleep through the night, and you wake several times from the pain of turning. I haven’t had such a strong flare-up in years, and it is painful, debilitating. frustrating, as well as scary. Imagine yourself losing control, the nagging pain robs your sanity and everything becomes a major chore. You feel the inflammation in your body in the form of sore, tender, swollen joints, and certain parts of your body feel as if they were on fire. There is tightness and you can’t make a fist. There is a burning, a desire to give up and not walk another step, although your feet are not tired and feel fine. It’s hard to endure, but even harder to adjust to your new reality and become friends with it. There is so much left you are planning to do, so many dreams waiting to be executed vs. being dreamt, you have goals and plans, and your body is reminding you that it might not come to pass. Your saving grace is your spirit, who is not defeated yet, there still is hope and you fight on, day after day. You do what you can to keep your mood high and positive. Sometimes it works, and sometimes you are just soooo tired of it. That is pretty much how things have been lately, filled with an unwillingness to accept the new reality although I have completely surrendered to what is. It had happened before and went into remission before, it could happen again and that’s what I choose to believe. But is there something more life is trying to tell me? Already on my knees, was my body in the process of forcing me into a decision, because my mind couldn’t make that choice. I truly think that it is what happened the last time. My body broke down to remove me from a damaging circumstances. Things turned out for the better back then, was it happening again?

Monday was such a day, and it was mostly my upper body, arms, hands and shoulders that were sore. There was pressure in my chest and I didn’t know if it was caused from the RA, taking the steroids and daily pain meds, or because my heart just had enough of enduring the constant strain. I took a few extra aspirin on top of the daily regimen that I’m already on per doctor’s orders. I managed somehow, became very tired but also very restless by the end of the day. I hardly did anything but rest. Was it really what I needed, another day of minimum exercise, mostly sitting and laying around? Something had to give and I knew it.

Tuesday morning came and the wheels were turning. I needed movement, and declared that just sitting day after day at Mom’s wasn’t going to cut it anymore. The temperatures were getting cooler, perfect hiking weather for me and a plan was born. I needed to exercise my heart and decided to walk to Mom’s. I was doubtful and had no idea about what strain I was going to put myself under, but I had to. I thought about resting points along the way if I needed to, while shaking my head at my own self and my incapabilities. What happened, I had walked much further distances in the past, never thinking about places where I might rest, but this was my “NOW” and I didn’t like it. Actually, I had to admit that I was growing to not like a lot of things about my current “NOW”, but so it was. At least for the time being.

I decided to rake up the pears in front of the house before leaving, and it would be a good indicator of how the joints performed, before risking the final journey. Although the small stretch of property in front of the house is the towns property, somehow it was still everybody’s responsibility to clean up the mess, and “The village people” knew who did and who didn’t. It was obvious, but also fuel for future conversations and a few looks. The previous storm had shook the tree hard, and the bottom around it was covered with fallen pears. I raked up five large buckets full and had to leave another pile that didn’t fit into the waste container. The pain was tolerable and actually felt as if the movement was helping. It was decided, and I got my pack ready. With water, lunch sandwiches, Fruit roll ups, jacket, I pad and phones, cables, sunglasses, PAIN MEDS, and wallet in tow, I was soon to be on my way. If I could only combine walking to Mom with a hike, an adventure to explore and see things, things usually missed by driving by quickly, if I could enjoy my time being out, to slow it down a bit while getting my exercise and step goal in, perhaps it would be a win win situation in many ways. I would also take advantage of the milder temps before the weather turned completely and winter arrived. It seemed like a winning combination and I was hyped up and pumped. My mind had performed it’s own little motivation speech

and off I was, walking each step to get closer to Mom. This didn’t come with the occasional moments of disbelief that I was actually doing it. I didn’t feel the greatest and while the pain in my legs were manageable, I still felt the tightness in my chest like a warning that this might not be the smartest idea. I knew that I had to keep pushing and promised myself to take it easy if there was ever a need. To listen to my body, but also make changes that my body needed to adapt to. I had reached the end of town as the neighbor chased by me per car. She was driving into the same direction I was walking in, but I was invisible and small. There was no time for a waive hello, heaven forbid for a offer or a lift, perhaps I wasn’t even noticed or seen. For a moment I was reminded that I would be completely on my own. Wasn’t it what I wanted…to slow things down and take time to breath? Wasn’t the rushing car that symbolized hectic and stress exactly what I was trying to get away from? Of course it was, but did the neighbor knew? It was more the principle of it, and realizing how wrapped up everybody was that had me bothered. I was reminded of the rat race I myself had belonged to not too long ago, the madness I was caught up in, with days that passed me by leaving nothing more but meaningless memories behind. Phew another day was in the books, did I manage to complete all my chores was my theme song. It was confirmation that I didn’t want to return, that I wanted the time to notice and that a different path would have to be taken.

It was a beautiful day for walking. The temperatures were in the upper 50’s, partly cloudy with beautiful “Puffies” (clouds) and a light breeze. The next thing I noticed was a playful red squirrel, a first since my arrival. I smiled knowing that surely I would have missed it, had I just driven by. My second message for the day was to have more fun and to take life a little less serious. Thank you Mr. Squirrel, indeed I needed that reminder. My senses were keen and I was in tune with what messages Mother Nature had for me. Just a short while later, a fuzzy caterpillar was near the side of the path, nestled safely in between the grass. Immediately I thought of it’s transformation to become a butterfly and how it related to myself. This entire journey had been transformative, I was getting my answers as well as insights of where I had been and where I wanted to go. Mrs. Caterpillar was no exception and another confirmation and reminder that I was following the correct path.

“Caterpillar holds the grand dream of becoming all that it can be, with no limitations, it reaches out to become it’s greatest expression of self. Putting everything aside, it follows the drive to evolve. Caterpillar teaches us to do the same, to find our power to transform in deep meditation, to go into the cocoon and emerge as a greater aspect of self…believing in the possibilities that with faith all things great and small are possible, and to remember that the grand and beautiful things have very humble beginnings”.

~Presley Love

…to be continued

Posted in Health, Photography

Last light near San Francisco’s Golden Gate

This picture was taken the night before I left for Germany.

It’s been seven days since I got here, and it’s been a hell of a week. Tonight it is barely nine PM but im in bed and the stresses have finally caught up with me. I’m sick and what started with an overall sore throat, has left me feeling kind of lousy today. I didn’t get a chance to rest today and my day was filled with things about Mom. I need to find better balance and although I don’t work right now, I have had no time to myself and it’s been hectic.

Tonight I hope to get rested so I can wake up refreshed for another day.

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….

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…