Fibromyalgia basically breaks your body down, so now my sugar levels and blood pressure are all wonky, here there and everywhere. My doctors are working on getting them all under control, but it’s frustrating, yesterday evening I crashed on the couch, finally went and check my BP and it was low, so I ate salty cheese whatever I could to bring it up. There’s always something with Fibro, always something. Life throws stuff at you, but it doesn’t have to break you, unless you let it. Lucifer will mess with all of us to some degree, especially including and sometimes especially those of faith, but whether he wins, that depends on us, on our will to fight in the heart, the spirit and soul.
Today I had to go for a bone density test and MRI of both knees, and it took two yours total, and the MRI of my knees not comfy as I have lower back issues to having to be there on my back and not move for an hour was very uncomfy. How was I not ready to jump out of my skin? Well, I asked for music, classical light music, so I allowed my conscious mind to set itself aside and make way for my subconscious mind.
Fibromyalgia, let’s face is is not a fun journey by any means, but I had two choices lay there and be miserable, or go into a meditative state and see if I gained any insight and once again that project for the wellness wheel came rushing through and last night I received a call from and old friend who is a very experienced hypnotherapist and wants to collaborate. I have been praying, meditating for God to unite me with people of integrity and ethics to collaborate with. Last night I get the call. Today as I was getting the MRI, I decided, breathe, relax, meditate, release, let go, and drift into a place of discernment, connect with the Holy Spirit and that is what I did and the time flew by. The other instinct I have is that any political activism or campaigning candidates and their surrogates do in the GOP must be tied to The Trump MAGA Platform of Conservatism. This nation can not go the other way, the way of thinking free stuff because nothing is free, even Venezuela’s government has now admitted Socialism is a failure. I can be scared for my country, and do nothing or be a voice that speaks up, even if it’s not popular, doesn’t matter. I can seek a group that understands this as I do and that the National Platform of MAGA must be tied into any advocacy etc.. done locally for Conservatism, who understand that Republican is not good enough, to save America Freedom Caucus, MAGA Republican is what’s needed, looks for and backs those candidates, fights for those candidates. I could let the fibromyalgia make me obsolete, a nebulous presence in the universe, or a start that rises out of the ashes to fight hard for God and Country, that is up to me, that choice is mine to make and I choose option number two. All in all it was a productive morning, even if a bit uncomfortable.
As I look back at how fibromyalgia has most affected my life it’s most impact has been in isolating me in a sense. I used to be an avid walker, used to participate in different activities, events, socialize, and slowly that was taken away from me, even going to Temple, to Synagogue, or to Church.
I felt very much as home at Synagogue, but not feeling up to going up to 14th street and the long service and then luncheon, study after, long day and I am not feeling up to it. Recently I had to have my right foot bandaged up for a few weeks, was told minimum pressure on it, so even the stairs at the nearby church were not appealing and an option, a lot of ankle pain. I find that even now with the osteoarthritis and other stuff acting up it will have to be Legion of Mary meetings and 1 hour Mass at the nearby church. For an artist to be really have her work known, even a life coach, live events, but that is a catch 22 situation for me. Since the Fibromyalgia is so unpredictable, if I plan and promote too far ahead and charge for tickets then crash and can’t do the event, then what? If I don’t do live events, well then nothing moves to the next level, so catch 22. I have to figure out a calculated risk situation where I can organize an event and not end up with “egg on my face” as they say or in any legal jeopardy. Syndromes take much away from you, they take away your friendships because sooner or later people get tired of your unpredictability and the inability to make plans, your canceling out at the last minute etc…and your mobility in some way, so you end up isolated in some way. You have to really fight through the inclination to go into any kind of depression because it is easy to do so under such circumstances. However, it’s important that you do. If you can’t go to the prayer service you used to go to, find something closer to home and for goodness sakes don’t be so in law and dogmatic about the place you to go pray, just as long as it is looking to Christ as Lord and Messiah, Son of God, or a different synagogue. Go to a nearby cafe a few times a week that maybe has poetry readings, find some way to connect, to be with people, to be inspired. Sit in the park near your home even if for just an hour each day, talk to someone. Don’t ever let a syndrome, a loss, sadness totally isolate you because it is very easy to let that happen, to go into depression and isolation. I have to fight that regularly that tendency when I get really tired of swimming through the fibro. Swim I will!
Right now I am on 900 mcg of gabapentin and topomax 75 mcg, and get shots periodically to help with the pain, joints, the overall everyday pain and discomfort that Fibro brings. However, I am starting to once again feel the overall joint pains and discomfort after it has calmed down for a bit. For some of us, there is the strict diet due to issues arising from the Fibro, so finding the roods that are gluten free and sticking to a very strict diet, not fun. It’s tiring, but what also happens is a battle with yourself. You are in a war with our own body, and it’s very tiring. Depression is easy to fall into, even chronic depression, so one truly has to have faith, some kind of grounding and something that helps you to move past it, not give up on yourself and life. I think this says it well.
Whether it’s clothing, which is a whole other annoying thing, pure cotton and soft cotton and silk, spongy silk like material are the only materials often we will tolerate, or even skin care, which requires the purest of ingredients etc.., it’s tiring, annoying and expensive, if you also have to take expensive supplements. I could just give up, stay in bed all day, and whiter away, but I won’t do that, and if I crash during the day on the couch as I am watching TV, well it is what it is. I refuse to be totally sidelined by the syndrome and I think personality, and all that has a lot to do with how we handle these things. I am naturally stubborn and a bit of a rebel, so I refuse to let this define me. I manage it, move through it, pain and all, but I won’t let it define me. What defines me is my faith, are my gifts and talents
Today I took a lovely long walk, something that many would take for granted. For those with chronic health issues, syndromes it’s something that matters. When a syndrome leaves you so exhausted, has you in pain on an ongoing basis etc…that you go stretches of time crashing in bed and not being able to even enjoy a walk, sitting outside in your favorite spot, having your ipod and listening to great music and meditation material. The best nutshell way to describe it is this: a complete physical, mental, emotional, spiritual assault on your body. This is one of the things I miss, that Fibromyalgia since it has flared up with a vengeance. I am hoping to reclaim that and a few other things. One of the things that makes those of us fighting chronic health issues and syndromes is when people say stuff like “but you look good” “maybe if you got out more” “you just need to push yourself more” People may mean well, but for us, these sound like what is being said is “you’re faking, lying” and “you’re just lazy, or exaggerating” My thought when anyone gives the kind of advice or nuggets of wisdom mentioned here is “no you S.O.B. I am not fine, not OK, not lazy, what the hell do you know about it?” I just want to smack the person and sometimes just want to cry from the frustration.
What might cause a flare up of Fibromyalgia or these types of syndromes:
What can you do if your dealing with chronic health issues such as pain, such as fibromyalgia? Consult your doctor before try anything to alleviate any symptoms etc.. Here are some suggestions, starting with foods. Try to incorporate anti-inflammatory foods such as: flaxseed, green tea, avocado, cantaloupe, walnuts, pineapple, berries, garlic, broccoli. Aromatherapy with certain oils as you meditate, even in your bath, such as:Balsam Fir, Bergamot, Roman Camomile, Rosemary, Lavender, Eucalyptus, Clary Sage. As far as exercise, you have to be careful when you have syndromes such as fibromyalgia. I for example am so hypersensitive I can not do any physical therapy, have any massage other than hot stone massage, do tai chi, walk. You need to consult your doctors about what type of exercise you can handle, is recommended for you. If you are crashing a lot, lots of fatigue, you can do some basic very light stretches at home, put on some music that is upbeat and some light dance moves, nothing strenuous, just to get the circulation moving. For me what also helps is spirituality and meditation, it’s a great anchor in the midst of the chaos that is fibromyalgia. I hope this helps, and that if you encounter anyone or have anyone with a chronic health issue or syndrome in your life this will help you understand, just a little bit better. On a final not I leave you with this, the stages of fibromyalgia, but this can apply to any syndrome or chronic health issue situation.
I went for my next to last IV Vitamin infusion today, one of a series of six in three weeks, after having done a series of three already a few weeks back. Today, the girl was distracted and not paying attention to which needle she was using for the IV or the amount of pressure on the IV. OY! There i am waiting for the thing to finish and waiting and waiting, my back started to hurt, my neck, and with my IBS, my bladder was screaming and was in great discomfort. I will also have to get sonograms done abdomen and pelvic, so water and full bladder, not fun. Yet, in the midst of the pain, and all that I was totally at peace with it all, wasn’t angry at anyone about it, was hungry so I rushed home, didn’t pick up my meds at the pharmacy, or run errands I needed to, but will have to tomorrow. What kept it together for me today and remembering that my eyesight seems to be a bit worse than the last time I saw the doc, just slightly, upcoming appointments, the pain I was experiencing? Faith, faith in knowing that all of the heavens were accompanying me, and that they would be not matter what twists and turns life takes me through.
Doesn’t mean I was not annoyed by what happened today, that the fibromyalgia doesn’t frustrate me in that it limits my activities, it does, but the faith is greater that the frustration, and so I am able to stay in peace and also think about what is my next blog piece going to be about? What is the next song I want to write and record/ Stuff like that. That is a beautiful thing and the beauty of faith, of a spiritual anchor, being connected to the Trinity, to a positive spiritual anchor.
I got my blood test results back and the results were thorns. My thyroid was high, and all my vitamin and iron counts, low. In addition my doctor expressed concerns about cysts in the pelvic and abdominal area, so change in thyroid meds, vitamin IV infusion twice a week for three weeks, and sonograms. Thorns, and more thorns, yet I find myself totally at peace, no anxiety, no anger about the constant crashing of the waves of fibromyalgia against my being. None of that, simply, do what you have to do to take care of things, keep working towards your goals. What am I doing in that respect? I am following instinct, rather what the Holy Spirit guides me to do.
I researched online, found music submission sites, to submit my music to blogs and radio stations, dj’s, so I am getting the music, stuff out there. I will do that consistently. This blog, well I will keep creating these meditation style pieces for you. I will keep seeking to find ways to inspire so on and so forth, and if you wish to support those efforts and donate I hope you do. I will promote this blog on radio and as guided by Holy Spirit at the right time, do live events, and I hope that will be soon. I understand that the plan of the Creator for my life is ministry, and now I am fully ready to be guided as to what that looks like. It is a beautiful place, a place of peace, beauty, fibro thorns and all.
Much of my life, and I wasn’t consciously aware of it, I was trying to prove I was worthy, I mattered, I was somebody and all that junk, who I was, what I did mattered. Problem with that is that in not realizing I already was somebody of great worth by virtue of being a Child of God, once accepting Christ, Consciousness of Christ, fully, had I done that straight up, not going in circles, I was very much loved, appreciated, and wanted. It didn’t matter if my dad, his family hadn’t wanted me, or my family thought any less of me for any reason, didn’t think I was up to snuff because I was artistic more than buried in books, philosophical conservative more than academic liberal, and the list goes on. I missed out on a lot of opportunities to develop my craft as a songwriter and vocalist because I didn’t think I could make it, really had what it took, not really and there was no encouragement anywhere around not where it really counted for me, so I thought. I never understood that no major gestures or larger than life stuff needed to happen etc… for me to make a difference. I could make a difference by saying hello, smiling, by speaking Gospel truth, with a poem, a song, any number of ways, taking a photo and posting it, that inspires, sure it may not win awards and it may not get me to Hollywood, not that I would want to hang there with those people, yuk, but saying, might not get me in the so called big leagues, but it can still make a huge difference to someone. It can ignite a beautiful memory that takes them out of depression, who know what that photo, poem, simple song can do, what that hello and smile can do. Maybe I don’t do it perfectly, get it perfectly right, and the fibromyalgia means I don’t do what I used to be able to do, or to it with as much gusto and energy as I used to, which is not do to laziness, contrary to what some might think, but due to the fibro fatigue, but that’s okay. I just need to show up for life, trust in the Holy Spirit, and let myself be guided in my gifts, and let the rest flow. We have so many ways big and small we can make a difference, so never feel that just because you are doing something extraordinary that the whole world knows about, you are not making a difference, you might be making more of a difference in people lives than you know.
Last week I had to get my shots for arthritis, today vitamin infusion shots, Wednesday more arthritis shots, for the next two Mondays more vitamin infusion shots, then there are the multiple meds in the morning, and in the evening, the constant fatigue etc… So, do I get bitter or do I get better, a better way of managing my life, navigating my life? I could allow myself to get totally depressed boo hoo, oh poor me boo hoo play me a violin yeah yeah yeah, oh please really? Don’t think so. Alternatively, I could enrich my spiritual life, create perhaps a greater spiritual and social network, engage more in the creative, start doing seminars, hosting seminars on topics I feel strongly about. The fibromyalgia is there, no disputing that, but just because that circumstance exists, doesn’t mean I have to be a victim. It is up to me whether I stay on surface and float, swim or whether I sink to the bottom. God can only help me, but I have to be willing to be helped, to be willing to reach out to him and fight the good fight, to want to float and swim, in the depth of my heart, spirit my soul somewhere. If I am then He will give me the strength to do so and at some point much more.
Letting go helps us to to live in a more peaceful state of mind and helps restore our balance. It allows others to be responsible for themselves and for us to take our hands off situations that do not belong to us. This frees us from unnecessary stress. Melody Beattle
For the past few days, due to inflammation from a recent ear and sinus infection I have been dealing with Vertigo, not fun, not one iota of fun. It reminded me that life requires balance, especially when you have something chronic like Fibromyalgia. You have to find a healthy balance of spiritual, emotional, creative etc…really important. I think when that is lacking you subconscious will do something to remind you that you have missing pieces, or things are out of whack and you need to find your balance again, or in the first place. That’s not always easy to do in this world we live in, but it is crucial to our wellness, very crucial. I hope that I can find my balance and find it well.