Slow Road To Recovery

My presence here has been off and on, mostly off, for quite a while now. Things have been pretty rough for a hot minute. My health issues hit an all time low last year. Increased levels of pain and fatigue sent me to a rheumatologist, sometime around May or June of 2019 After decades of unnamed suffering, it was oddly comforting to finally have a confirmed diagnosis of an autoimmune disease.

I left the doctor’s office with a prescription, which I began taking the following day. This is where things get really skewed, as far as keeping track of time goes. Over the course of several weeks on the medication, I was feeling worse than before, then had a severe reaction to the new medication and was instructed to stop taking it immediately, which I did. A few weeks later, I went back to his office and was given another prescription which I began taking that week and continued to take the new stuff once a week for several months.

As time went on, there were dose increases which barely helped the pain, but gave side effects which grew worse as I continued to take it. I felt sick from my head to my toes, then my GI system began to revolt, big time. Finally, unable to stand it anymore I called the office and am glad that I did, because once again, I was told to stop taking the medication immediately, which I did. After another few week gap with medications, I went back in to see him and was prescribed weekly injections.

The first injection went pretty well, with little side effects so I felt hopeful. Then came the second one, and oh boy it was bad, plus my GI system still wasn’t healed from the previous medication. I felt relieved that I hadn’t had the prescription filled yet because I at least wanted a break from it. My body just felt like it couldn’t take any more. Then, six days after that last injection I woke up with both injection sites red and angry, and my entire body just felt ill. Feeling like I might be due for a trip to the emergency room if things got worse, I called the drug company and spoke to one of their nurses, as it was a Sunday. She was great. Despite my hope that I could continue that medication, she told me that I could not, because I was having a serious reaction to it which warranted immediate cessation of it. Thank goodness, I began to feel better over the course of about five days.

Now, I have been medication free for somewhere around three weeks (I think) and am feeling better than I have in quite some time. I’m in a good deal of pain, and my fatigue is still there but not as bad as it was before stopping the medications. That makes three different drugs, all of which made me more ill than before. So, I called the doctor’s office and left a voicemail a few weeks ago, explaining what had happened and letting them know that I’d like a break from all medications at least until my next visit which is scheduled in June. Just days after this happened, Covid-19 really hit the United States and ground everything to a halt. I did not hear back from them, as I believe they’ve temporarily closed their office. That’s fine by me, because I’m not sure if he would try to convince me to try yet another drug, and I’m not there for it.

About a week ago, I was going through some old journals to try to remember when I had seem something pretty cool that happened outside, and while flipping through the pages I found that my first entry about the medications making me extremely ill was in mid July of last year, which means that this had been going on a bit longer than I thought it had. I knew that I had spent months being ill, to the point of being mostly confined to the bed or couch, but thought it’d really gotten bad in the Fall. Wrong! It’s easy to lose track of time when illness grinds your life to a halt.

I’ve been spending the past weeks recuperating, and while it is getting better I’m not quite there yet. All those months of being utterly inactive have taken their toll, plus my autoimmune illness is not being treated. My decision though, is that I am not going to try any new medications unless/until blood work looks like it would be a necessity. I’m sure that there are other medications I can try if the need presents itself, but for now I would rather deal with the pain and give the rest of my system time to heal. For the first time in ages, I’m engaging with things I haven’t been able to for the better part of a year and that feels great. Hopefully, I’ll be making it back here again before long. While I miss writing and art, I’ve been focusing on my physical and spiritual recovery. My entire life has been changed as a result of all of this, among other things and I’m enjoying the process of slowly finding myself again.

It’s my sincere hope that all of you stay well. Take good care, and be safe out there.

Sending love your way.

Rare Personal Update

Hello everyone,

Way back in my early years of blogging, I wrote a little bit about my life with chronic illness. As a brief catch up, for anyone who wasn’t here then and those who have perhaps forgotten, I’ll say a little about the past and move on. I’ve been dealing with chronic pain, fatigue, and a whole other wide array of symptoms for decades. I almost died of pneumonia at 2 and as a result my immune system was damaged, was diagnosed with osteoarthritis, mono and mild scoliosis at around age 13, chronic fatigue syndrome in my early twenties, fibromyalgia in my late twenties, and degenerative disc disease in my thirties. For the past six years, my family doctor has suspected an autoimmune disease but blood work never showed any markers.

Finally about three months ago, I was referred to a rheumatologist, at my request, because I was in the worst flare that I’ve had in at least ten years. This flare was relentless, lasting for almost two months with no sign of letting up. I’d been under great stress, which I’m sure is the catalyst for the flare. Earlier this month, I went back to the rheumatologist for a follow up. I was diagnosed with connective tissue disease, with some features of lupus and concern for developing psoriatic arthritis. The hope is that the doctor can get this contained before it goes full beast mode, as well as to prevent any further damage to my joints and connective tissue.

With high hopes, three weeks ago, I began taking Plaquenil, which is supposed to be the mildest therapy with the least side effects (except for the rare potential for blindness, nothing to be concerned about there). As the past three weeks wore on, I’ve only gotten sicker. More fatigued, more pain, nausea from hell, but I was willing to go through that thinking that it would swing in the other direction eventually. This was until a few days ago, when out of the blue, my knees felt like they were on fire and turned as red as a well cooked lobster. Over the course of a few hours, the redness dissipated but the joint pain was excruciating. Then, other joints in my body began hurting too and other symptoms set in as well. So, I called his office and was told to stop taking it immediately and to drink as much water as I can stand to help get the medication flushed out of my body. Who knows how long this will take, but I’m hoping not too long because frankly, this sucks. A new treatment plan will be coming up at some point in the near future. This makes me a bit nervous as that was the mildest treatment, but then again, something more intense might not be as bad as the reaction I’ve had to Plaquenil. Time will tell.

All I know is that right now, I’m in about month three of increasingly severe illness and feeling more than a little disappointed that the treatment has only made things worse so far. In my typical fashion however, I will not give up, nor will I let this keep me from getting back to the things that I love as soon as I am able to. The pain, fatigue, and brain fog have kept me from engaging in all of my usual creative activities but I’m sure that this won’t last forever. Just wanted to come here and let all of you know why I haven’t been around…and that I will be back…hopefully soon.

I’m grateful for a few people in my life, who have helped me to feel less isolated and have been so compassionate and understanding with my current decreased capacity. This experience is helping me to further clarify what I desire in my life, especially when it comes to my relationships with others. My circle is narrowing, as I move toward creating relationships which are healthy, reciprocal, positive, and fulfilling. Being this ill has taught me the wisdom of loving others, but loving myself more. Gone are the days of one sided relationships, and consistent energy sucking conversations. Most importantly, I’ve made the conscious decision to no longer be a receptacle for the negativity of others. Over the years, these types of relationships have taken their toll both mentally and physically and it has to stop, effective immediately. My health comes first, and that means conserving my energy for healthy relationships and activities which bring joy to my life, and hopefully that of others. It’s past time to bring more positivity back into my life.

This has been a really long post. If you’ve made it this far, thank you! I’ll see you again, hopefully very soon, and hopefully with something creative to share.

Much love,

Tracy

 

Still Around

While I have nothing creative to share with you today, I wanted to let all of you know that I’m still here. Right now things are still in a state of suspended animation and may very well remain that way for a few more weeks. Over the last two days, I’ve at least been able to be still and sit in my own space without feeling like I’m crawling out of my skin. Part of this is because I know that I need to allow myself to be with my thoughts, another part is that I truly feel the desire for solitude right now, and the final part is that my autoimmune and neurological issues have reared their heads in a pretty big way and I know that I have to slow down.

Due to time constraints, not to mention the fact that my mind will only let me be inactive for so long, I’ll be making a creative comeback within the next week. I have a jam packed, wonderful October planned. For those of you out there who know me and worry…please don’t. I’m fine and I will be fine. I’m making plans for next week to keep me out of a rut. What I’ve learned over the years and in the past few weeks in an accelerated fashion is how important it is to strike a balance which honors who we are and what our needs are, and right here and now, my need is to be still and frankly…alone. I truly appreciate all of the love, support, and listening ears over the past few weeks. There is a need now however to turn inward for my answers for a few days. Not only that, but I need to trust those answers, and not second guess myself about them. There is one answer which I am already sure that I trust (yes J…you), but a few others which I need to reflect on.

One of the things I’ll be doing for the remainder of this week is devoting some quiet time to asking myself what all of that means for me right now.  So, while awaiting the other half of one particular puzzle to figure out where, if anywhere, they will choose to fit…I am stripping things down to the core of just me…where do I want to be…what do I want to be doing. These answers will be the same no matter what the outcome of the other situation is. Anything further than the very basics of my own personal stuff has to be put on hold for now, and that just has to be okay, no matter how trying and exhausting it may be. Be back soon with some creations to share!

I also wish to say a few words about the recent natural disaster taking place in the southern United States. My heart goes out to everyone impacted by the storm. I can’t even imagine what they are going through because I’ve never been through anything near that magnitude when it comes to the weather. It’s going to be a long road ahead for so many people as they rebuild and recover. Times like these make many of us more mindful of the lives of our fellow humans beings. Love and kindness go a long way… as do compassion and action (no matter how big or small we are capable of), each and every day…not just when tragedy strikes.

Be gentle and kind to yourselves too, please. ❤