Rebellious Worship

Rebellious worship, those words don’t seem to fit together. Except for, of course, in my case. I find it necessary as the Holy Spirit moves me to be rebellious in my worship.

You see, I have several chronic illnesses, one of which is Hyperadrenergic Postural Orthostatic Tachycardia Syndrome. Professionals are advising individuals with POTS to avoid singing. Generally speaking, I follow advice to a T. However, there are times in worship, I am rebellious. Personally, singing allows me to connect with God and worship Him in an extraordinary manner.

Worship is more than a song, therefore there are many alternative ways to worship God. No one style is better than another. Never the less, music holds a special place in worship. Perhaps this is because many admirable Christians worshiped this way; such as King David, Mary the Mother of Jesus, and Jesus.

I have been singing praises to God for as long as I can remember. Some of the times I had been most filled with Christ joy was during worshiping Him through singing. I have many lovely memories, which I cherish, singing praises to the Lord with friends as an adolescent.

It is a struggle for me today to sing most times. It is hard to get adequate air to reach certain notes or to get enough air when rests are scarce. At times, I have a dizzy spell. The focus though isn’t my physical limitations, but the righteousness of my Lord. The physical combat, for me, is no reason to stop singing praises to God. I believe He knows my heart and the struggle I endure. I also know without a doubt that my worship is pleasing to Him.

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Shake it Off

Living with a chronic illness is a challenge beyond words when encountering people who don’t understand. We have all had an experience of rudeness beyond belief. There are stairs when taking medication in public. Rude remarks when using a walking device. 

 I cannot tell you how many times people have been disrespectful or stared at me because I use a wheelchair in a store. The majority of the time people either stand in front of me, unwilling to move or practically run away. People act like I have the plague. I have heard over the few years I have used a wheelchair in a store that I am too young to use one or too pretty. The stairs and remarks make me feel like I owe people an explanation. However, I do not need to explain my life to everyone I encounter. If the right doors are open to education someone I don’t mind but there shouldn’t be a social pressure to explain it all. 

 Many people doubt the intensity of our pain and they question if we are indeed really sick. No one seems to understand battling against your body and taking care of yourself is a full-time job. Simple tasks are draining. Some people go out of their way to upset us or to be rude. They offer unnecessary options on how to break free of the chronic illness chains.

 

Too often Spoonies lose friends due to their illness. Some people want absolutely nothing to do with us while others act strangely towards us. 

Too often people judge us before they get to know us. People treat us at times like we are nothing or are stupid. 

Too often we hear phrases like: 

But you don’t look sick

You need to be more positive

Have you tried…

You’re too young to be sick

It must be nice not having to go to work/school

You’re just having a bad day

You need to get more exercise

It’s all in your head

Maybe if you got out more

These things get under a spoonies skin, to say the least. When people mistreat you, SHAKE IT OFF. It is not your fault. Don’t let them get to you. You are an amazing person. Even though you are ill, you are so valuable. You have so much to offer this world. Shake off the stares, Shake off the negative and nasty remarks, Shake off the heartbreak…. Shake it off.. It’s gonna be alright

Hold your head up high, cause it’s gonna be alright. You have so much courage. You are an inspiration for thriving despite every setback. Sending lots of spoons, prayers, and hugs. ❤

Seriously, I Can’t Hear You

I can’t hear you. Could you please repeat that? No, I did not hear you come in. I am completely serious, though it is hard to believe at twenty-three. I previously blogged at my hearing loss mentioning a couple unstable theories. Shortly after, receiving my HHT diagnosis, I was told I needed my hearing checked. The doctor who relayed the message was skeptical because she had been on my case for a brief amount of time and was unaware that I had issues hearing. To be fair, the doctor who ordered it was never told either. Simply, because it never came up, furthermore, it did not seem relevant

I went through an intense hearing test while I was having no trouble hearing. I found out a few days later that I have extremly mild bilateral hearing loss. However, was not mentioned at the appointment, I am guessing because it is so minor. There isn’t anything to do, but it is a great thing to know.

If you went undiagnosed for any significant amount of time you understand the value of a reason for dictating symptoms. Though there are an overwhelming amount of questions at times without answers, having a name to the monster helps. The name doesn’t not by any means make the road any easier it just makes someone feel validated in their bodies rebellion.

 

Spoonful of Spoonie Encouragment

Mornings for those with a chronic illness are a struggle beyond words. Waking up and willing our bodies to function is a fight. Here is a spoonful of encouragement for spoonie warriors. Happy Monday, brave friend!

You have victoriously made it out of bed this morning. The symptoms and pain are already overwhelming, but you’ve got this. You only need to take today one minute at a time. You have all the strength you need, even though it might not seem that way. Anxiety and depression attempt to dictate your day. Take a breath. Take a break.  Get some rest. Keep fighting to make today the best day possible.

You have been chosen to walk this path. It is one filled with heartbreak, disappointment, and setbacks. Walking the path of someone who is chronically ill is a challenge to say the very least. Being sick has most likely disrupted your flawless rhythm with life. It has stopped you dead in your tracks. Your illness has tried to toss your dreams out the window.

Though this path is difficult, I assure you there is a lot of beauty to be discovered. Sure life is not what it used to be, but the song you sing is just as beautiful. There is hope, joy, love, laughter, and life to be found on this path. You will be able to recreate your wonderful dreams. You are still you, despite your illness. You are an amazing and beautiful person with a flawless story and a huge purpose.

    There will be days that you become overwhelmed and feel completely alone. Your feelings are understandable, however, I promise you, you do not walk alone on this path. There are people who care about you, people who understand how difficult the journey is, and people who want to support you.

I am proud of all you have accomplished. I know you will thrive today. This week will be lovely simply because it is the only choice. While you don’t need to be positive all the time you need to take baby steps forward. You are doing amazing. Raise your coffee (or tea) to a great week warrior!

Saline Update

I got my second round of Saline at Chronic Care earlier this week. This time I got two liters over about four hours. It was much longer than I had expected. The staff there was fantastic. The doctors have set me up to have someone come in to do a safety check in my house to accommodate things for when I fall and I got another neurology referral.

I was impressed with my results following my first Saline treatment. I was able to shower without feeling dizzy, walk in the store twice, and did not fall for a week. Pretty amazing stuff! It was a 90% improvement with that treatment.

During this infusion of Saline, it was noted that my blood pressure had drop fairly low-mid 90s /60. I do feel a big difference, but some dizziness most likely blood pressure related. The dizzy spells improved about 75- 80% this time which is still excellent.

I have another infusion Monday. Then meet back up with the doctor a week later. It is a very promising treatment at this point in time, which I am hoping to continue.

IV Fluids For POTS

Wow, I guess I don’t do health updates that often. I just noticed that it has been six months since my last POTS update.  I haven’t done many updates on my POTS because little progress has been made. Just an overview my pressure is still on the low side, heart rate most times insanely high, falling, near syncope, tremors/muscle spasms,  headaches, and brain fog. Later in the day is extremely difficult especially the closer I get to my Remicade infusion. I am thankful that I now have a rollator walker. It makes life easier after showers to safely get back to my room.

I have noticed the brain fog affecting me more cognitively lately, which adds to my frustration at times. There are times I have dyslexic tendencies while writing. I will switch or mix up letter. My spelling at times is worse. I tend to file that stuff under POTS.

I have had minimal success with POTS treatment. I have been on a tachycardia medication, but it is not consistently doing its job. Somedays even with the meds my heart rate is 160.  The steroids raise the blood pressure slightly but I sill come in at low 100- 115/ 50-85 ish.

Needless to say, my POTS treatment leaves my doctor frustrated, my family frustrated, and me frustrated. Falling every other day or more just isn’t acceptable anymore. I have been doing it off and on for three years now. My body is exhausted. I have injured a few things. My bones are not in a place that this is remotely safe. I kindly but firmly told my doctor we need to do something, anything at this point. It was a long debate with begging

I kindly but firmly told my doctor we need to do something, anything at this point. It was a long debate with begging laying out several creative options; medication changes, IV fluids, or teach me to accommodate my life. I was extremely respectful and compassionate as I always am with every medical professional (I remain that way even with the nasty ones). I thanked him for all he has done furthermore mentioning I am beyond thankful for the hospital. I find it important in the midsts of frustration to express that I am thankful and I understand I am complex but we need to work together so that I can have a better quality of life. Despite my compassionate response things were left at that point in time unsettled. My doctor wasn’t thrilled with my options. At my next appointment, my mom accompanied me as always and sat silently. My doctor was more compassionate, willing to listen, and was impressed with the research I had presented to him.

Despite my compassionate response things were left at that point in time unsettled. My doctor wasn’t thrilled with my options. At my next appointment, my mom accompanied me as always and sat silently. My doctor was more compassionate, willing to listen, and was impressed with the research I had presented to him. Even so, I could tell he was not sold on the idea of using IV fluids to treat my POTS, however, we had tried everything else. It seems too simple. Too basic. Thankfully, he allowed me to try which is all I could ask for.

You, need to learn how to be your own advocate. Speaking up doesn’t mean throwing a fit or being nasty. Speaking up can be done compassionately and with respect. It gives you a voice, an active part in your health, and respects your body. Never be afraid to ask questions or say no.

Today I got my first round of IV fluids. I also had my Remicade infusion, which I will do a separate post on. I was at the infusion center for four hours total and a four-hour round trip. I am expecting to notice a difference tomorrow.

So for anyone who is wondering, how can simple saline help POTS, I will gladly share. More research is needed, but the results to me are amazing and worth trying if your POTS doesn’t comply with normal treatment. Most of us are very dehydrated this, of course, helps with hydration. Additionally, it can help blood pressure, heart rate, decrease passing out or near passing out episodes, help the person stay upright, and possibly more. In my case, the hope is to also decrease shaking, improve brain fog, decrease infections (that could be related to dehydration), and decrease kidney stones.

Today I got about a litter and a half. Furthermore, I was told to keep up all fluids by mouth. Very rough estimation 50-60 ounces by mouth which are a slight decrease from a normal day. I will have two additional tiral runs of fluids next week at a center called Chronic Care. I am extremly hopeful with this treatment.

A Mother’s Perspective: Chronic Illness

I am so excited for today’s post. We have a courageous mother of a daughter with several chronic illnesses. It has been an honor for me to speak with her briefly and to read a bit of their inspiring story. I hope you are encouraged. ~ Victoria

I am Kimberly, a full-time single mother, but more importantly mother of a teenager with chronic illnesses. EDS, POTS, MCAS.
Receiving a diagnosis is not a destination, but more so a journey.
Here is  a brief account of our journey to date:
It seems like yesterday on one hand and a lifetime on another. Three years ago during a rheumatology visit, unexpectedly during examination, the physician began piecing random dislocations, atrophic scars, fatigue, velvet skin, and overall illness into EDS. As he was identifying pieces, he stated this appears like Ehlers Danlos syndrome. I have worked in the medical field as therapist for 20 years and this was new to me. So like most, I instantly googled everything I could sitting there. I recall immediately being referred for blood work, Physical therapy, and cardiology that same day. Upon leaving his office I don’t think I will ever forget the look on his face. It was one of concern, sadness, and unknowing to me an awareness of a journey that was heading our way. As my daughter and I sat in cardiology she jokingly ask “so what do I have”? We proceed to laugh as she said EDS meaning explosive diarrhea syndrome. We laughed and I knew whatever it was we were going to conquer it.
As time progressed with additional falls and dislocations therapy ensued. It suddenly appeared dizziness and nausea were occurring. New referral and now POTS (Postural orthostatic tachycardia syndrome) diagnosis added.

Ok, but now what about these strange rashes. Well, that lead to MCAS(Mast cell activation syndrome). A few other diagnosis came along being eosinophilic colitis and pineal brain cyst through testing. Most recently TMJ and cervical compression issues also noted.  If you have been through the diagnosis process you know it’s not so easy as picking up the phone and immediately obtaining a physician appointment. Some list were 3-6 months long with genetics 1 year. Then you add follow-up visits for a wide range of disciplines. It’s overwhelming and difficult to manage a ‘normal life’ whatever that even was.

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In gaining awareness of these disorders and living it daily I have found a new appreciation for anyone experiencing these. I have seen the suffering from physical pain, fatigue, and mental components from anxiety/depression that a teenager should not have to deal with it. Being a teen is hard enough, let alone adding a chronic illness. Yes, it’s a struggle. Do I still feel we  will conquer this….. no. We have accepted at this time there is no cure. We manage symptoms. Do I feel deflated…. yes. As a mother, I like most want to fix my children’s problem. I have found that being supportive and her biggest fan is the best I can do right now. I have listened to her requests to give her more control when she declines testing. I get it when she says “why should I it doesn’t change or fix anything”.
I want others to know it’s challenging as a parent, but it will be ok. You have to be prepared for sudden ER trips that will change your family plans, hoping that loud sound wasn’t a fall or passing out again, keeping a watchful eye for strange rashes, preparing for school IEP meetings, and wow what about that mediset. Goodness, the medications seriously is this all? Expecting a teenager to recall all these and learning to fill set herself…. What happened to driving, boyfriend, and social issues teenage parents have? They are still there, but different. Friends change, the real ones stay, but it does change. No one prepares you for this.
With all the losses you feel, I promise that if you embrace the journey and take the good with the bad it makes life better. I don’t know what the future holds, but I am hoping through advocacy and research more treatment options become available. I know joining a support group locally was one of the best things I did. Talking to people that have been where I am and offered supportive listening. I am forever grateful to them and blessed to have a wonderful family that help. Are there days when I’m mad… yes! I’m angry and scared. What happened to college based on interest, not physically accessible and near physicians in the area!
You as I have learned, having a chronic illness, is life alternating for everyone. I surely wish my daughter didn’t have it. However, she does and I intend to ride this journey with her and advocate to the best of my ability for her and others like her so that there is dignity, respect, and research to aid in hopes of a cure one day. This is my journey and hope for a final destination.
Chronically Hopefully,
Kimberly