Tag Archive | Dysautonomia

Patience in my 2018 Chrysalis

 

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FEB – I began going to an Integrative Medicine clinic, but then couldn’t afford the chiropractor. I talked to the nurse practitioner for 3 hours! We went over diet, nutrition, supplements, medications, exercise, and emotional health. It felt good to have everything taken care of for me. She told me to begin taking the steroid medication since I could barely walk without it, but that she’d help me get off of it when it was time. The nutritionist told me to add in “good fats” and pink Himalayan salt with everything I ate, and to eat more fruits and vegetables.

MAR – I began Physical Therapy. My trainer’s daughter has POTS, so she understands my dizziness. She even taught me a new coping technique! Even with a drop in blood pressure, I wondered if I might stay down again, I got back up! I rested and didn’t push too hard until I was able to work through it. 

APRIL – Tried some new things, and kept up the things I’d been doing. Plenty of meds and supplements to go with my physical therapy, rest, and compression clothes. I spent two days in exhaustion for every moment of fun. 

MAY – I was able to drive up to an hour. I graduated Physical Therapy. While I was continuing to get stronger, I feel like I was just given more coping techniques. I’d been able to organize a little at a time, and scrub carpets because they are on the floor.

JUNE – I’d been able to garden since the weather cooled down. I ran across a parking lot to see friends of mine at a restaurant which I hadn’t been able to do in a long time. I felt like I was coming out of hibernation like my garden one week, then the next be exhausted again. It’d been a year since my body crashed, and I was kinda frustrated that it was taking so long to heal this time.

JULY – I was able to visit friends and family, be down for a couple of weeks, and go visiting again. I missed people, but I would pay for it, as well. I began counseling this month: art therapy and EMDR, and upped my exercise amount to 30min.

AUG – I increased my endurance and resistance in exercising, even though my body kept going back down, and scaring me. It seems less and less each time.

SEPT – I was able to go on a walk with my dad for about an hour! I usually work out indoors on a treadmill and elliptical, so this was new! I’d been working outside whenever possible with the kids. They carry things for me, and I’d sit on the ground and work on it. (I would like to get up and not feel dizzy or think about every step I make. )

OCT – I’d been working really hard on my thoughts staying positive, as well as, correcting my family.

NOV – I missed my meds/supplements one morning taking the kids to their appointments and had to recover for a few days. Said goodbye in this life to a couple of very dear supportive friends of ours. I forgot to reorder an anxiety med and it gave me electric shocks for Thanksgiving. I tried wearing magnets to stop the shock, and it did help until I was able to get my meds.

 

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My New Year GOALS: I think these are enough to keep me busy for a while! 😊

#1 Now that my meds, supplements, and salt levels are stabilized, my next GOAL is to stand and sing while directing music NOT using something to prop me up. I have come a long way from sitting with legs propped up and sometimes not even having energy to sing.

#2 Since I am able to exercise without Physical Therapy, and I’m working up to exercising everyday, my next GOAL is to be able to run long-distance!

#3 Since I am working on many different types of healing therapies and learning to cope well moment by moment, my next GOAL is to be able to manage my home: sleep patterns, stress levels, and discipline…. maybe pick up some more housework one at a time when ready.

#4 Since I am beginning to have fun outside my home, too, my GOAL is to remember to be aware of my needs and abilities first, and set boundaries to keep myself safe.

 

 

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Crowned with Compassion

Today, I did not use valet parking for my trip to the doctor. That’s right. I parked my own car and walked the distance in without being supported by the wall. It felt so good. Granted, I’m tired, now, but it was so worth it.

This new progressive change is due in part to cutting out activities outside the home, so I could focus on healing, and my chiropractor’s care. 

 

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I still struggle with not feeling enough because of all that I cannot accomplish.  The hardest times for me right now are:

-Getting up after sitting a long time (movie theater/church,)

-Remembering that I still have limits (I so want to do EVERYTHING, but then am exhausted for a couple days after,)

-Standing still for 5min or more,

-Doing anything that heightens stress or nerves (the nervous system messes with a normal person’s autonomic function let alone someone with Dysautonomia.)

But, I realize that my worth is not in my accomplishments, and that I need to keep repeating that to myself.

 

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My youngest daughter  was doing really well at her chores, so I thought I would ask her to do a little more. She put away her clean clothes in her basket, but I also asked her to take care of her hanging up clothes. (She usually cannot be alone or she gets into trouble.)

 

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Her sister and brother were doing their homework in her room with earphones on. When she walked in the second time, they became irritated and yelled at her to get out. She tried to defend herself and ended up crying all the way down the stairs. She tried to tell me through sobs and I told her that I heard the whole thing.

 

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I reminded her that many times, she has not been trustworthy, so they just did not trust her. I asked her if she wanted a hug. She pouted, “yes.” I hugged her, rocked her, and told her that she was loved. I love her and God loves her even if other people are not loving.

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Then I put her hand over her heart and told her to say, “I love myself.” I asked her three times, but she refused. She then said, “I like saying I love other people.” I agreed that it was easier to love other people. I reminded her that she was worth loving, she was important, and that even if nobody else showed her love, that she could. I asked her again to say, “I love myself.” Finally, she did and I got her to laugh and say it again. I also reminded her that if people don’t treat her right, that it’s okay to walk away instead of argue and defend. But that she also needed to continue to work on making good choices, so that she could be trusted.

 

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And after I delivered this message to my sweet 5yr old, I realized that I might as well be saying that to myself.  Thank you, God, for the reminder that I am lovable because I am Your Child even though I am imperfect and don’t meet even my own expectations. 

 

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Steady Me

I was shaky, but I figured I probably just overdid it the day before. I did every form of Magnesium I could think of and it didn’t work. My body crashed again: too nauseous and tired to get up. The doctor put me on blood pressure meds to temporarily stabilize me until I could see the cardiologist to come up with a long-term plan.

 

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This is the one symptom from EDS/POTS that I couldn’t figure out. I fought every day to eat the right foods, take supplements, gauge my energy levels, and keep from getting viruses with essential oils. My goal this year was my health… again, but more specifically the dizziness, ‘blood not getting to my head fast enough’ stuff. (POTS) I was frustrated when my body crashed a couple weeks ago because it looks as bad as a few years ago. But if me getting to a low again is the way to figure it out, let’s do this. 

 

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Hubby bought me sunflowers to brighten up my room.  “to keep the zombies away.” Lol. He sent out a message to all of our friends:

‘”As many of you know my wife’s EDS/Pots/Dysautonomia has flared up again in the last couple weeks. She is bed ridden about 90% of the time. She is on blood pressure meds and has an appt with a specialist in a couple weeks. Many have asked what you can do to help. 1) pray. 2) drop her a note of encouragement. 3) stop by to visit and/or lend a hand around the house. 4) take the kids out while I’m off at work.”

 

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I received cards of encouragement, and a few visits. Many people let me know that they were praying for me.

“Sending prayers of strength, restoration of health and lots of hugs your way. Our God is a restorer of health.. take this time to be still and hear His whisper.. there is always a battle before a victory. Keep believing.”

 

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My 9yr old girl asked, “Mommy, are you still sick? When are you getting better? It makes me sad when you’re sick.” My 13yr old became angry at being in charge again and the kids didn’t want to listen to him. He admitted that he’s angry that I’m not better. I know. Me, too.  I reminded them that anger and sadness are okay emotions, and that I feel them, too. This broken, sinful, imperfect world hurts, but we keep giving that hurt to the perfect One who can heal us.

 

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People I didn’t know very well brought me food, even though, I knew how difficult it was to follow the Paleo diet. They cleaned my home, and even weeded my garden that I was so upset about not getting to go out in. They even took my kids out to play for most of the day.

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This is Week 3: I am still not able to walk well without feeling sick to my stomach, being hard to breathe, or feeling like I’m going to pass out/exhausted. But, I sat up outside for a little bit, and even got dressed in normal clothes, painted my nails instead. I continue to do my best to rest, but I will also keep trying to get away from my room. I’m angry about moving away from my support group, but grateful to have a new one. 

 

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My mom and sister are researching with me while awaiting the cardiologist to get this mystery solved quickly. We feel all the symptoms point to two issues. We hope to rule out the heart issues. The obvious is POTS, but regardless, we want to know, so we can move on to how to deal with it. (Not knowing is the hardest part.)

 

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God has helped me solve and manage symptoms well before, He can do it, again.

 

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I’ve had symptoms of this all my life (dizziness, near fainting) and it’s time to deal with it. (especially since my daughter is beginning to display symptoms, as well.)

 

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I am definitely not alone! I am so thankful to everyone who has uplifted my family and I. I am fighting hard to be a good patient and await my doctor, as well as, take care of myself.

 

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I’m not dead, yet!

I just woke up this morning with more energy and became so excited to clean a couple of rooms!!! My daughter helped me to plant a couple of plants, and a couple of friends stopped by. I’m exhausted and a little nauseous, but happy! I was not created to rest continually. I’m a Dreamer and a Go-Getter, and I will accomplish those dreams regardless of how long it takes.

 

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Now, before you go chastising me, know that I have been bed-ridden 3 times in my life, I am fighting hard to take care of myself with Magnesium hourly in one form or another plus food, and rest, and…. I can only read so many books before I’m bored!!!!

 

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I think I’m regaining energy! After laughing with my sister, she reminded me of the “spoon theory.” It has been such a hard decision for me to choose what to spend my energy on this last week, not knowing how much energy I have to begin with.

 

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I had the kids pushing me through the house and to and from the garden. My husband carried heavy bags of dirt and mulch for me to play 5 minutes at a time. I spent a half hour in my dream garden I haven’t finished, yet. And, I will not be antisocial just because I don’t feel well… I may look like I’m falling asleep, but I love people.  I’m not dead, yet! Lol.

I’m so thankful for my hubby who has not batted an eye at doing all the dishes, laundry, and grilling enough food to last the week each week.

 

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I feel like I’ve (we’ve) gotten so good at managing my symptoms, that I forget that it’s NOT normal. I forget that I (we) need support… some days more than others. We all do. So, even if you don’t quite understand what I deal with, I’m thankful to those who are there for my family and I. Thank you for your compassion, prayers, and friendship regardless of whether I look well or not. I really appreciate you. 

And… If you’re wondering what you can do for me,

#1 make me laugh,

#2 feel free to sit and talk with me; be a friend,

#3 if I ask for help, do not embarrass me and draw attention to the situation,

#4 I know how busy life is, and I won’t ask for help unless I am certain I absolutely need it, and you’re able to give it. But, I won’t refuse service, either.

 

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Thanks so much for being part of our lives. I love you!!!! But God loves you more. 

 

 

 

Dire Circumstances, BUT God…

Well, I had a few really good days before my body crashed again. (fatigue/dizziness) I was really frustrated, yesterday, that it didn’t make any sense. So, I’m going to just say that I was sick. When people normally get sick, it’s random, unpredictable, and inconvenient. I don’t understand the reasons, but until then, here is a list of the things I’ve seen God be there for me this last week:

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1) God brought a friend back into my life that had hurt and disrespected me a year ago. I have kept boundaries in place, but He has been healing and leading her.

2) My oldest accomplished double his schoolwork last week to spend time with his grandparents fixing up their home. What an amazing teaching opportunity, and relationship builder!

3) The kids helped me research new recipes. My oldest even made one to take to our family reunion last Saturday! Because of this, there were no complaints about how “Mom’s killing us!” or “We’re eating like birds!”

4) We were able to spend quality time with some of our best friends in this weekend before they move later this week. I know God brought them into our lives blessing us in so many ways, and that He will bless us with more friends. It was great to spend time and hope to make plans together in the future, too.

5) I loved going to my home church, singing with incredibly talented people who I’ve missed, hugging many that I love, not needing Google maps to find my way, and feeling so loved that I could face the world again.

6) I’ve been able to work through some issues while my parents encouraged me.

7) We came home safely and were able to get the house back in order, so that I only had laundry and dishes left.

8) When I was wondering if I needed to ask for help, I realized that the house was fine, the kids know how to feed themselves because I haven’t made dinner in months, and I just needed rest since I couldn’t do much else.

9) The van’s axle broke with me driving across town. I was safe. Ford fixed it for free because of an old recall.

10) Our upstairs bathroom is getting remodeled! It’s been leaking since we moved in, so we tried not to bathe much… But we have a shower upstairs, now, and the bathroom could be finished by the end of the week.

11) The kids found out about a VBS down the street and were excited to go. Without a vehicle, I wasn’t letting them go in the rain. They prayed for it to stop and it did when it was time to go.

12) My neighbor took my kids last night to VBS since I couldn’t walk them.

13) I am grateful for those who show kindness and compassion. A friend who asked if she could help without embarrassing me in front of others, listened and tried to understand, and made sure I safely returned home.

14) Free valet parking at the hospital. He never questioned why I might need help even with his eyes. (I’ve had people do so in the past with Walmart carts.) Never made a comment about how good I look to not feel well. He even helped me with my door and seat belt. Kindness is God’s love. 

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I could go on with every detail. But I just wanted to say that regardless of how dire circumstances seem, God is always there. He’s been working things out for my good from the beginning. He knows and loves me personally. Circumstances change, but God never does. He is the same yesterday, today, and forever. This is why I trust and love Him.

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It’s not fair!

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“It’s not fair!” My 5yr old son was throwing a tantrum. I asked him to do his chores, he refused, and now was missing out on the T.V. show that his siblings were watching. “It’s not fair! It’s not fair!” He continued. I can completely relate to this feeling.

 

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When I was 13yrs old, I gave up chocolate because I was addicted to it. A speaker at church talked about addictions, and I took to heart that scripture, “if your hand offends you, cut it off.” (Mark 9:43) In quitting chocolate, I noticed that my asthma attacks went way down. It was difficult. I proved that I had self-control and that it did not control me.

 

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When I was 16yrs, I noticed that my stomach felt like it had knives in it when I drank milk. I switched to rice milk, though, the colonoscopy results said “the beginnings of stomach ulcers.”

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When I was 18yrs, I began passing out and having severe migraines. I found a severe intolerance to Red Dye #40, and a corn allergy were the cause. Often these ingredients were together in products which made it easier to avoid both.

 

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And now, in my mid-thirties, my body won’t tolerate sugar. A little over a year ago, I began experiencing Chronic Pain and Fatigue, and other Dysautonomia/POTS symptoms. My body is very low on salts and doesn’t hold them anymore, so sugar sends me right back where I was over a year ago. It’s just not fair.

 

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This Christmas, they were passing around treats at church, and normally, I can refrain because they are pre-packaged. (Either chocolate, corn syrup, red dye or all 3.) But there were tiny muffin size home-made pecan treats… so I ate a few. Almost immediately afterwards, I felt light-headed. I went to the kitchen and took out my emergency Nuun tablets. It wasn’t enough this time. It was just not fair!

 

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Now, I have been learning to love myself this last year, but right there, I turned immediately to frustration at myself. But, if I truly looked at this situation with love, I would see how far I’ve come and be a little more patient in my learning… just like my 5yr old child in the beginning of this post.

 

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A year ago, I didn’t know why I was so exhausted. I not only have those answers of why, but how to heal. This is my first Christmas knowing how sugar hurts my body. It’s hard to cut out foods or change anything regardless of what that change is. And frankly, life just isn’t fair. It’s okay to grieve through it. We all have our own struggles. I’m realizing that the expectations I place on myself to “Get it right already!” are just as damaging as the sugar itself.

 

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I have learned to avoid harmful foods before. I have made healthy changes before. I can be patient with myself while I learn to change and be healthy in this new way. I have a wonderful support system that is ready to help me in the way I ask. I can use my voice and ask for help. I can change and learn at a pace that I’m able to handle. And… I can enjoy the accomplishments I’ve made this far.

 

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For more articles like this one:

Faith and Encouragement

Treatments for EDS

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