I wanted to do this blog post soon than later. I’ve been in tears for over a while now because I know it’s close to the time where I need to let him go to… More
This blog may be a little long. I ended up getting a number of questions for me to answer. I did combine some questions since some of them were similar. Thank you for all of the questions and I hope my answers will help you understand what GBS/CIPD. I will follow this up with comments from my husband and daughters. It will be about what they went though with me being sick all the time.
About a month ago, I sent out emails, posts on Facebook and on my Instagram page that the month of May is Guillian Barre Awareness Month. I have been doing GBS Awareness posts for a number of years and I will include links to those blogs so anyone can reference those for more information. I have included links also for website called Guillian Barre Syndrome Foundation. There is a lot of information and videos that describes what GBS is. As with many things, I want to make a disclaimer that what is normal for one person may not be for other people.
I have the CIPD variant of Guillian Barre Syndrome, which is the chronic form. I’ve had it a number of times, when people normally get’s GBS 1 time and the degree of disability varies from person to person. I’m trying to stay away from information overload, so I hope I can make it easy to understand what GBS/CIPD is. I have included links to the information that I’m sharing. Just put your mouse over the link and it will take you to the page for the information.
Here is a link to a video on Youtube that kind of shows you what I went through. This is a short video and will show you what I went through. When I first came down with it, that was before video taping and sharing my story. Please what Miranda’s Journey which is pretty close to my own experience. The only difference I had this 4 times and I don’t know if she has or not. but, it’s easier to expain what I went through by showing this video.
Last years blog posts was more of a personal type of posts and was one of the hardest times when it came to my GBS experience. These are links to last years blog posts. There are also a number of other blogs that
- May 11th, 2918- Guillian Barre Awareness – Part One
- May 13th, 2016 – Part 2 from GBS Awareness –
- July 15th, 2018 – God Has Different Plans – Part 3
My experience with Guillian Barre Q&A’s
Q. What is Guillian Barre Syndrome?
A. (Guillian Barre Foundation )- Instead of me using my way of describing it, I figured it is best to give the accurate medical lingo to describe what it is.
Guillain-Barré (Ghee-yan Bah-ray) Syndrome is an inflammatory disorder of the peripheral nerves outside the brain and spinal cord.
It’s also called:
- Acute Inflammatory Demyelinating Polyneuropathy
- Landry’s Ascending Paralysis
GBS is characterized by the rapid onset of numbness, weakness, and often paralysis of the legs, arms, breathing muscles, and face. Paralysis is ascending, meaning that it travels up the limbs from fingers and toes towards the torso. Loss of reflexes, such as the knee jerk, are usually found.
Q. You said that you have the CIPD variant of Guillian Barre Syndrome. What does that mean?
A. Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)? The easiest way for me to describe it is that instead of Guillian Barre Syndrome going away and left without a number of symptoms that continues being a problem. This is what the National Institute of Neurological Disorders and Stroke(NINDS) website says. It often presents with symptoms that include tingling or numbness (beginning in the toes and fingers), weakness of the arms and legs, loss of deep tendon reflexes (areflexia), fatigue, and abnormal sensations. CIDP is closely related to Guillain-Barre syndrome and it is considered the chronic counterpart of that acute disease.
Q. How did you get GBS?
A. I ended up getting Guillian Barre Syndrome from the flu shot. From what my Dr said, I carry a certain antibody that reacts to viruses such as the flu. From what the Center for Disease Control and Protection (CDC) website says that there are some people who have gotten GBS after having the flu or other infections such as pneumonia, strep throat (which is how I ended up paralyzed the second time. I ended up with GBS from the flu shot, 3 weeks after getting the injection.
If you have gotten the flu shot, you may have noticed on the bottom of the paper that you have filled out you will see this listed at the bottom about who should NOT get the flu shot. This information I got on the CDC website.
People who should talk to their doctor before getting the flu shot:
If you have one of the following conditions, talk with your healthcare provider. He or she can help decide whether vaccination is right for you, and select the best vaccine for your situation:
- If you have an allergy to eggs or any of the ingredients in the vaccine. Talk to your doctor about your allergy. See Special Considerations Regarding Egg Allergy for more information about egg allergies and flu vaccine.
- If you ever had Guillain-Barré Syndrome (a severe paralyzing illness, also called GBS). Some people with a history of GBS should not get this vaccine. Talk to your doctor about your GBS history.
- If you are not feeling well, talk to your doctor about your symptoms.
Q. How did you know that you had GBS and what were your symptoms?
A. That is a great question.
I was a very athletic person. I ran on the average -10 miles a day. I was only 17 when this was all happening. I was tired all the time. I normally woke up by 8 AM and then I would go out for a run. I enjoyed sports and played on a girls softball team, tennis, volleyball, track and field and cross country. Since I left home and moved in with my then boyfriend and husband now, I only did running and biking.
One day I went into Nolanville, Texas and it was less then a 2 mile bike ride. I was heading home and my legs felt heavy. I couldn’t get the strength to walk. I needed to walk across the street where my bike was. But, I had a horrible time doing that. I did manage it after an hour. I came into our house and it was all I could do to go up the three steps to our house. Our room mate said that I took so long because I was trying to get out of helping clean. But, I went to bed and I was just exhausted.
Over a 2 week time span, I went from very athletic to not being able to walk, lift things and anything that took an effort. I lost strength that started in my feet and went up over those 2 weeks. I knew something was wrong, so I went to the hospital, but the Dr’s thought I was on drugs. But, when I got diagnosed finally, I was completely paralyzed up to my forehead and on life support.
Q. How did I know I had GBS?
A . I finally had a Dr believe me and he ordered a spinal tap(lumbar puncture). This is a procedure in which fluid surrounding the spinal cord (called the cerebrospinal fluid or CSF) is withdrawn through a needle and examined in a lab.
They were testing the fluid because they suspected it already. They knew that it was GBS because the fluid was a darker yellowish/straw color which they said it was that way because of the protein in the fluid. Normally the spinal fluid is clear.My fluid was close to the last on of the 5 vials. It should have been clear.
Q. Is it contagious? If so, is it hereditary? I know you have daughters and grandkids, are they at risk.
A. This is a question that I get quite a bit. This is what all of the informational websites says; The exact cause of GBS is not known. Researchers don’t know why it strikes some people and not others. It is not contagious or inherited. … In Guillain–Barré syndrome, however, the immune system mistakenly attacks the healthy nerves.
I have 2 daughters and 7 grand children. Because of all of my medical problems, I was only able to get pregnant once. We did adopt Rebechia, which would mean there isn’t anything I would have handed down to her and her children. With my daughter Jessica and her two children, they don’t take the flu or the pneumonia immunization. My health problems have caused them to stress over the possibility of them getting what I had. Dr’s always say that it isn’t hereditary and not contagious. I have no doubt that it isn’t contagious since it is as auto-immune disease. They also say it isn’t hereditary, but I have seen it happen when it comes to families. They don’t know for sure.
I have had this 4 times and it’s always because I have gotten sick or I was around someone sick. So, we do our best to prevent getting around anyone sick when possible since I have almost died a few times over just getting sick. Since there is so many unknowns. We don’t know about hereditary things.
Q. My uncle had GBS about 15 years ago. He is in a wheelchair now. The Dr’s told him he would never get it again. I’ve read on your blog that you had I believe that you have had it around 3 times and you still have some residuals. Will my uncle get this again?
A. I don’t know if I can answer that since everyone’s experience is different. All of the Dr’s I have seen and places like the GBS/CIPD Foundation, CDC and others have said this;
GBS can range from a very mild case with brief weakness to nearly devastating paralysis, leaving the person unable to breathe independently. Fortunately, most people eventually recover from even the most severe cases of GBS. After recovery, some people will continue to have some degree of weakness. While I have had it a number of times and have had a variety of symptoms, that isn’t true for everyone.
Guillain-Barré syndrome can affect anyone. It can strike at any age (although it is more frequent in adults and older people) and both sexes are equally prone to the disorder. GBS is estimated to affect about one person in 100,000 each year.
Q. Are there ways to prevent getting Guillian Barre Syndrome?
A. Not that I know of. I just know that I do my best to not be around those that are sick since I have had it. I don’t know if there is even a test to see if you have the potential of getting it. I heard they have an blood test for it, but it isn’t a normal test and I haven’t had any of my Dr’s and Neurologists suggesting it.
Q. I had a family member that died from Guillian Barre Syndrome unexpectedly. We were told that she would be OK once it starts reversing. I belong to an online support group and what they are describing, it doesn’t fit with what my family members doctor said. Have you come close to dying? Do you have a fear of dying?
A. I’m sorry to hear about the loss of your family member. Since everyone is different, it has to be difficult to lose someone you love when you were told they would be OK. I was also told that once my muscles and the nerves began working, I would never have any issues from it. When it comes to how I deal with my diagnosis and death, I’s not afraid of death. That’s because of my faith. I do worry about those I will leave behind. If it wasn’t for my faith, I would be terrified.
Q. I have known you for a long time and I have found you inspirational because of how hard you have and are fighting. How do you stay positive when so much has happened?
A. I for sure have my moments. I have those times when I just want to throw in the towel. It’s pretty much where I get to the point of , “sick of being sick” type of mentality. I just don’t post a lot of that stuff. But, a number of years ago, I had to change my negative thinking because I was having more bad and angry days. Thankfully God helps me through those moments.
Q. You said that you try to only discuss your experience with having Guillian Barre Syndrome at this time of the year, why is that?
A. I think that is a good question. Basically I don’t like to talk a lot about it because I don’t want people to say, “that’s the person who has Guillian barre Syndrome” or “I feel bad for everything she is going through”. That’s because I know some people have medical problems and that’s all they talk about. One of the ladies that I was friends with that became her identity. My illness isn’t who I am. My name isn’t Sandie Guillian Barre Syndrome. I’m simply Sandie Divan. When this lady only talk about her medical things, it became apparent that she was using her medical issues as a tool to get people to donate to her and to do things for her that they normally wouldn’t do. They did it because they felt sorry for her. While I have GBS/CIPD and a number of other medical problems because of it, that isn’t who I am.
Q. I had Guillian Barre Syndrome 5 years ago and it’s been very difficult. I was intubated and then had a tracheotomy to help me breath. I’m still in a wheelchair. I wish I would have died and not be a burden on my parents. How does your family handle your medical issues?
A. For me the hardest thing was being intubated and not being able to breath and not being able to tell anyone what I was thinking and feeling. I couldn’t move or do anything. I totally understand that. that is something I still have problems with. I have made it a point to have my medical directives drawn up by an attorney so I could make sure to never be put in that position. Last year, my Dr’s didn’t listen. You can click on the links I shared at the top of the page.
I don’t have many fears, but, I understand how difficult that would have been for you. If you need to talk you can send me an email and I will contact you and I can give you some information about one of the group I go to Guillian Barre Syndrome Surviors Group on Facebook .
I was having a conversation with one of my grandsons. He was telling me how hard life is for him. JJ was upset with his mom because she never does anything for him. He has this perception that he does all of the cleaning in his house and he has no food to eat. He also says that his parents are meaner than any other parent since they get everything their child wants. I let him continue while I was waiting for my daughter to come back to the car. I didn’t share the conversation JJ and I were having with my daughter, but he just wanted to continue talking. That was a big mistake, lol.
As JJ continued talking and he was visibly upset. My daughter was asking what it was like when she was little and how both of my daughters got everything they wanted (NOT). I’m sure JJ regretted him opening up this conversation.
My daughters were born in 1980. So, there were no computers, iPads, big screen T.V.s, cell phones or video games such as WII’s, Play stations, Nintendo’s or WiFi’s. We had only 1 T.V. Our first television was a 13 inch black and white television. And when our daughters were pretty young like in the 1st grade, we had the Atari video game. The only games to play on it was pong and something else. He was shocked that we didn’t have video games.
I told him that if we wanted to play games, we went to an arcade. We didn’t have games like that at home. It was hard enough for us to be able to feed our daughters and cloth them. There were times we would have to go to a food bank since we didn’t have any money to even buy bread. We would also get cloths from thrift stores or other families if they were getting rid of them. Again he was shocked and he thought I was lying to him.
As parents, our priorities were on raising our daughters. We weren’t focused on keeping up with the Jones. For Christmas, our daughters didn’t get expensive gifts. We normally only had around $20-$25.00 per child to spend on gifts. We shopped at a store called Pic N Save. Pic N Save was on the lines of Dollar general. Since we shopped at stores like that, we were able to stretch the little bit of money we had. So, Chuck and I did the best we could do to make Christmas happen.
Many of the toys and gadgets that my grand-kids have, cost more than what we would spend on most of our bills. We didn’t have the $200 or more that JJ gets with just one Lego gift. They didn’t need expensive Lego sets, barbies, computers, games and so on. What they enjoyed and I honestly think that many kids today doesn’t understand that spending time as a family is more important than a tree filled with expensive toys.
We adopted our daughter Beckiah. She arrived at our house 4 days before Christmas. All she had was a brown grocery bag filled with cloths. She had nothing else. We already spent all the money we could for Christmas gifts and for food. We had to make our money stretch until our next payday. When we got word that Beckiah would arrive the following morning, we had to scramble. We already got Jessica’s Christmas gifts, but we had nothing for Beckiah. Jessica was only in the 1st grade and she joined our conversation and she said that we could give Beckiah some of her Christmas gifts. I was bawling at her kind gesture.
Our daughters knew the truth about Santa and the Easter Bunny. They knew there was no Santa and that Christmas is about Christ and so is Easter. I didn’t have any money to buy more wrapping paper since we now had to split gifts. Jessica went to work. We took all of the gifts out from under the tree and then took name tags off of the gifts that was going to Jessica. Jessica didn’t know what she was getting, but she was OK. She was and still has such a giving heart. So, all the gifts that were labeled for Jessica was relabeled for Beckiah.
One of our neighbors came over to the house to help me get things ready for Beckiah to come home. Nelana asked me about what we were doing for Christmas, meaning gifts for both of the girls. There was one gift that we couldn’t split up. It was a surprise gift for Jessica. We bought her a Big Wheel. We new we couldn’t afford a second one. I told Nelena that we will wait to give Jessica the Big Wheel until we can get a second one. Little did I know that Nelena didn’t go straight home when she was done helping me. She went to the toy store and got a Big Wheel for Beckiah. Nelena also got each of the girls a baby doll and stroller.
As time marches on and more time passes by, the more I look back on those days with so much fondness and nostalgia because I miss their simplicity. Life was pleasantly simple and joyous.
I wish things were the way they were then. I loved the conversations, silliness the time we would spend with my daughters by baking cookies for the homeless. We would do the 12 days of Christmas for unsuspecting neighbors. I didn’t have to compete with a television, computers, laptops, iPad and so on. We just enjoyed being together.
I was born in 1963 and our lives was vastly different then from the world we know now. I’m not going to go into the whole this is what it was like growing up in the 60’s and 70’s.
I use to get bored when my parents and grandparents would say something like, ” I remember when…. “, and a very long story followed that discussed their childhood. I’m sure I had some eye rolling going on. Now, I share stories of when I was younger and simpler. Which I know my grand kids humor me by listening and roll their eyes.
I did share privately with JJ when my daughter was out of the car that he has parents who love him and his sister. They are able to give them gifts that educate them and gifts that they enjoy. I let him know that many kids would be happy to have just one of the gifts that he gets. They make sure that they buy him the best mountain bikes instead of cheap ones that he could get hurt on.
For his birthday a few years ago, Jessica and Jason had a swim party for JJ’s birthday and he was allowed to invite his entire classroom, just so he could make friends. I let him know that there are kids who have no parents that love them or anyone. I think he hears it so often, that he is desensitized now.
I let him know that when my daughters were his age, there wasn’t much that we could afford to do. My parents didn’t do things with us kids. We grew up with the mindset of “kids can be seen, but not heard.” I know JJ wasn’t fully listening since he was sitting in the back seat, which his ipad on his lap and he wanted to know if I was done talking. I miss the days of having conversations with people and being able to see a persons eyes looking back at me, instead of down at a computer.
My mother in law lived with my husband and I for a number of years after my father in law died. She would tell us the same old stories over and over again. Oh, what I would do to hear those stories again.
I watch this families video’s on youtube. His channel is called, “White House on the Hill”. They are a sweet family who raises all kinds of birds, chickens, pheasants and Emu’s. While I love learning about his farm and raising chicks from eggs, I enjoy watching their channel because their family doesn’t let technology run their lives. They do things as a family. Click here to go to their channel.
I miss growing up on a farm. We lived with my grandparents in Indiana in the early 70’s. Grandma grace was a Sunday School teacher and I think my foundation and love for the Lord is because of the things grandma shared. We had our own garden, raised our own chickens, ducks and so on. My grandparents lived in the middle of Amish Country. We had no indoor plumbing, no electric and no restroom. My grandma cooked food from the garden and we ate the chickens we raised. We had an outhouse and our baths were in a trough. In the winter, our heating was from a wood or coal burning fireplace. We took bath is inside in a makeshift tub. During the warmer months we bathed outside and someone held up a sheet so nobody could see us.
I have subscribed to their channel because their family and lifestyle reminds me of a time when my Grandma Grace was still alive and how no matter how hard things are, we can get through it. I tried my best to instill those qualities in my daughters.
In closing technology is great for many things but it comes at a great price . When we depend on technology for everything, the price may be too high. My daughter will ask JJ a question over and over again while he is looking down at his ipad. She raises her voice and asks JJ the same question that she has been asking for 5 minutes. he then shouts at her and asks her what she wants. He is so zoned into his game that he hears nothing around him. He doesn’t even know where we are going since his head is down the whole time.
The price of technology is too high in my opinion. When technology takes the place of real relationships, then that’s to costly. When I was younger and my daughters were younger, I feel they had a better life even though we didn’t have a lot of money. We knew how to play with friends and family. We could interact and use our imagination without computers. we didn’t need all of the bells and whistles that children have now.
Here’s a link that talks about and helps with children using gadgets and apps. I understand that there are educational applications for children. I feel that if the parent is limiting the usage and the amount of time the child is on the ipad, then that’s the parents decision. Don’t be one of those parents who lets the computer be the baby sitter.
This is part two talking about How technology isn’t the best. On the first one I mentioned that I will be about living in Hyder and my faith and baptism. Since we didn’t have anything to watch, computers or ways to talk to friends unless they lived by us, we had to come up with ways to do things and use our imagination.
I’ve shared this experience about my faith and about my baptism before. But, I’m more than happy to share again.
I remember watching some members of the Nazarene Church in Knox Indiana getting baptized. I wanted to do that so bad. It wasn’t just because of how they got to go swimming, it was because I know how important and pleasing it is to God to be baptized. My grandma Grace would tell me about how we need to be baptized in water and by the Holy Spirit. I didn’t quite understand what she meant by being baptized by the Holy Spirit since, well, He’s a Spirit. But, I figured God knew how to do it spirit and all, so “here I am”.
Since I went to church at a Nazarene Church, they won’t baptize anyone until you get 14 years old. It doesn’t matter if I fully understood or not, the pastor said that I would have to come back and ask then. If Jesus could speak to the Elders in the temples when he was 12, I would think I was good to go and be baptized.
I would have had to get permission from my parents in order to get baptized, even if I was old enough. The only reason I even got to go to church was because my mom wanted us out of the house and someone from church would come and get us. I won’t go into the reasons on why we needed out of the house, but it was for the best.
Our family moved away from Indiana and I think at some point we moved back there and again back to Arizona. There are a number of years that I don’t remember. My sisters can remember them and some family members do, but I don’t. They have all told me that it was good to forget.
But, anyhow. at some point, we moved to Hyder, Arizona. It was in the middle of nowhere. It was hot, not just hot, but it was a preparation for Hell. There wasn’t anything we could do and it was so hot, we couldn’t do anything outside unless it was 6 am or after 7 pm. But, we did have irrigation ditches.
- WHAT IS AN IRRIGATION DITCH?
Irrigation ditches are man-made channels that deliver water to homes, farms, industries and other human uses. Most ditches divert water from natural creeks and rivers and bring it to other areas.
When we moved to Hyder and we seen these ditches, we were curious. My dads boss who was the owner of Thompson Farms told us that we can swim in them, but be careful. They will add sulfur to them once in a while. They do that to fertilize the cotton and I would think to kill bugs. He told us to never go in or by the water if they are adding surfer to it. With sulfur it is yellow and stinks really bad. I would think it would be dangerous to even inhale. Those irrigation ditches was right in front of our trailer, so we could smell it all the time.
Sulfur is mentioned many times in the Bible. Anytime I’ve read anything in the Bible about sulfur it isn’t a good thing. Here are a few verses;
- Luke 17:29- But the day Lot left Sodom, fire and sulfur rained down from heaven and destroyed them all.
- Revelation 9:17 – The horses and riders I saw in my vision looked like this: Their breastplates were fiery red, dark blue, and yellow as sulfur. The heads of the horses resembled the heads of lions, and out of their mouths came fire, smoke and sulfur.
- Revelation 20:10– And the devil, who deceived them, was thrown into the lake of burning sulfur, where the beast and the false prophet had been thrown. They will be tormented day and night for ever and ever.
Since I knew that sulfur is bad, I had no problem staying away from it. Jerome told us kids that if the water is clear and no sulfur is in there, that it is safe to swim in and just stay away from the tubes or we can get sucked into them and we would die. OK, so let’s thinking about this for a second.
We moved to AZ when I was in the 4th grade and I became involved with a little Baptist Church that met in a trailer in Hyder AZ. The baptisms from Indiana still stuck with me and it was something I wanted to do so bad.
- DON’T go in or near the water if there is sulfur in it. If it is yellow stay away from it and if it smells like surfer, stay away from it. He said it could and more than likely kill us as in dead and gone and we will be left for the rattlesnakes. Now, that’s a heck of a deadly warning isn’t it?
- Don’t go swimming through the little tunnels because we will drown since the holes are just big enough to fit a body and we would get stuck in the hole. There would be nobody around to save us. There were no police in Hyder. The closest officers were over 70 miles away. There were no Dr’s, paramedics or firemen either. So, if you want to stay alive, don’ play in the tunnels or the tubes.
After he told us those things, he started to leave and told us we can go swimming and just pay attention to those rules. Egads, that was horrible. But, we did get enough courage and we went swimming in the ditches. We stayed away from anything that could suck us into a hole and we didn’t swim in yellow water. I always knew about yellow snow, but this was a whole other learning curve lol.
There was this family that came to welcome our family to this middle of nowhere and invited us to church. I was super excited. My parents of course were not. My sisters didn’t want to go to church. They only went because mom and dad knew we would be out of their way. My bother wanted nothing to do with it. I begged my mom to go. Even though my parents don’t believe in God, they finally told them that they can pick me up. After the family left, my parents told me that they didn’t want me to say anything about church, God, what I learned or anything else. If I did mention anything church wise, I would pay the price.
The first Sunday at this little Baptist Church, the pastor was talking about the importance of Baptism. Baptism was the top thinking that I have been wanting for so long. I asked him about what age I would have to be to get baptized. I didn’t have to be 14, but I would have to have my parents approval. I knew there would be no chance in asking. I’m sure I had tears in my eyes. There was absolutely no way I could even say God in my house yet alone ask about Baptism.
So, my little 10 or 11 year old mind and heart came up with a solution. But, I needed help with it. We had the irrigation ditch, which has water. And on most days it was clean and clear water. On other days it was the kind of water that will kill ya. Since there was nothing else to do in Hyder, we would swim for hours. But, before we went swimming, I would ask my friend Kim Thompson and my sis Joyce if they would like to be baptized. They gave me some really stupid looks. Kim’s family is Catholic and our family is, well, nothing. I’m a Christian and that’s as far as it went.
I watched many baptisms. I didn’t have a Bible of my own, so I had to say what I remembered that the pastor would say. I would stand in front of them and then I would ask Joyce and Kim these things. I’m sure the words aren’t exact since it was so long ago. But, this is what I asked them and in turn they did that with me.
- Do you believe that Jesus is the son of God?
- Do you believe that He died and was raised to life?
- Do you accept Him as your Lord and Savior?
And then I would have them hold their nose and close their mouths and then dunk them. I didn’t realize way back then that once you are baptized, you are saved. So, every time we went swimming before we did anything else I wanted to be baptized. I don’t think they wanted to all the time. I just didn’t want to take any chances.
During that part of my life, be having the many baptisms gave me peace. It’s hard to explain. As a child my life wasn’t very good and most days I didn’t know if any of us kids would survive. But, because of being baptized so many times, I felt different. I always knew God was with me, but during those times, I just felt complete. Over the years I have always wondered if my true baptism that I got on the day I turned 14 in Willcox was my actual baptism. Or if even though I wasn’t baptized by a pastor and I was baptized I would think close to 100 times, if that was my true baptism. There was no service, pastor or documents. But the feeling I had, I 100 percent meant every word I said. God gave me so much love, grace and mercy in my life.
While Hyder had nothing to do at all. What it did have been an irrigation ditch that could kill a personal easily and that ditch had life-sustaining power.
I would love to hear your experiences of when you got baptized. I would also like to hear about what you think when it came to my baptisms in irrigation ditches.
I will share more about the Baptism of the Holy Spirit on a future blog since this one is long enough.
This is going to be a series of how technology isn’t always the best thing.
When I was younger our family lived in a very tiny spot on the road called Hyder, AZ. Hyder is located between Gila Bend and Yuma, AZ. This would have been in 1974 or 1975.I use to think I hated it because there was never anything to do. We had to make up our own entertainment. Hyder was about the same temperatures of Death Valley, rattlesnakes were all over the place. We actually lived across the street from a den of rattlers. We also had what seemed like millions of scorpions. Hyder is now considered a ghost town and I can honestly see why.
I was in the 5th grade when we moved there. The school we went to was about 40 miles from our house and we had to be picked up around 4 in the morning and we got home around the same time. That’s because it’s all farmland and kids lived all over the place. It took us a long time to get to school. The school I went to was called Sentinel and there was 28 students from the grades 1-12. There were 2 trailers for the classes. For grades 1-4, they met in the single wide trailer. The teacher for those grades most of the time was drunk by the time we made it to school. I tried to find images of the school and it looks like it isn’t there any longer, which I totally understand why lol.
When the teacher was passed out on the floor, my teacher Mr. Hollingsworth would send one of the kids in our class over to teach those kids. He would decide on who went to help by who passed the spelling bee and math bee for that day. It was first thing when we got there since we needed to go over right away.
While we lived in Hyder, we had to create our own entertainment. Our T.V. had three channels and that’s with Rabbit Ears. My dad always chose what he wanted to watch and it was always news. There were no discussions of arguments. We never argued because of the way my dad was and the constant fights that were very heated. I won’t go into that right now.
We did have a phone and our phones were on a party line. A party line is a shared service line. I think we had to share our line with 4 or 5 people. The way we knew if we had a call was because of a code ringing system. I think our ring was a high pitch ring that rang three times. If we accidentally picked up someone else’s call, we just hung up and apologized. If we wanted to make a call, we had to pick up the receiver to make sure nobody was on the phone. None of us kids were allowed to make calls or receive calls. My parents always unplugged the phone after 5 since they went to bed around 6 pm and the same for us kids. Since we lived so far away from anyone, we didn’t really have many friends that would call anyhow.
I did make friends at church and my dads boss Jerome Thompson had kids our age, so their kids were our friends. My mom would allow me to walk over to Kim Thompson’s. But that was at least a 2-3 mile walk across the desert and I had to keep an eye out for rattle snakes since I had to walk right past the dens. My parents didn’t really care about us walking that far or the dangers I would come across. It would usually take me an hour or so to get there. That depends on how many stops I made to drink or sit down. If I seen a snake, I got there faster lol. Oh and also there is wild boars and no trees.
I usually always walked by myself. If something happened, nobody would know since there were no cell phones or anything out there. It would for sure NOT be anything I would ever let anyone I loved do. I did know enough though to bring a gallon of water. That water was gone by the time I got to Kim’s and her parents were more than happy to bring me home. Since we couldn’t use the phone, I couldn’t call them to tell them I was coming over. I would say that during the summer, our thermometers showed that it was always 125% F.
Since there was no entertainment or friends, we came up with ways to have fun. We would get up early on the weekends and during the summer. Most of our days were always outside. Because of how my parents always fought, we did anything to stay away. There was 5 of us kids, and we would play baseball, run, Frisbee, swim in the irrigation ditches, play in the orange groves and since we lived in cotton fields, we would play in the fields and throw the hard cotton ball pods. If the cotton was only partly showing, those hurt and they were sharp enough to cut ya.
We also played kick the cans, tag, running races and we played with cars on our made up dirt tunnels and roads. One of my favorite things to do was look for cool and unusual rocks in the gravel. It sounds boring, but I would spend hours looking for unusual rocks. That is until it got to hot outside, They would bruise like nothing else if you got hit by one.
Because of the lack of any kind of technologies, we knew how to play and use our imaginations. We were exhausted because of how hard we played. Which having to go to bed so early, being exhausted was a good thing. We weren’t allowed to sit around a computer, television or be on the phone 24/7. Since we couldn’t make any noises at night we had to sleep.
I won’t be going into any of the negatives in this series of posts. I’m going to do my best to talk about the positives. My next post will also be about living in Hyder and my faith and baptism happening in irrigation ditches. So, please check back.
In September 1980 I had my first onset of Guillian Barre Syndrome. I ended up completely paralyzed from my feet to my forehead. I’ve had many people asking me to share my experience. I found out after I had a second round of Guillian Barre Syndrome because I was around a sick child. It was at this time that my Dr’s figured out that I have the CIPD variant of Guillian Barre Syndrome. Normally when you have Guillian Barre Syndrome, you will never have it when you’re getting better. Over the next week or two, I will be taking questions from anyone and I will do my best to give my experience.
Here’s a short video that will explain what Guillian Barre Syndrome is in a medical sense. But, I will be answering questions that pertains to my experience.
For the past year I haven’t been feeling good at all. Normally when I get sick I bounce back pretty fast. Since May is Guillian Barre Awareness Month, I decided that I will do things a bit differently. I have written other blogs about my experience and I will put links to all of those blogs, that way you can read them all. Since I will link all of the blogs and that way I won’t be repeating the same old things.
But, I’m going to do a Q&A type of blog post. If anyone has questions, I will post my answers on here in May.
So, you can comment on this post or you can email your questions. My email is email@example.com
I’ve been working on trying to save my churches website since a dishonest company stole our domain. But, while I was working on the Bible Studied and Small Groups page and the calendar, God was putting the fact that I haven’t been to Sunday School for a very long time. That’s something I need to change for sure.
I took a break from the website since I have spent 70 plus hours just getting it back online. I was having HTML code blocks. So, I took a bath and turned on my radio. When I take a bath, I always play the CD that was done by Joey and Rory. I’m not into the whole country music thing. But my mom loved Joey, so I feel closer to my mom and to God.
Sunday School has been a part of church culture for years. Unfortunately, its importance has been severely diminished and underestimated. Some people do not believe that Sunday School is important while others believe that Sunday School is only for children. This is seen as adults drop children off at church instead of going inside with them. But why is Sunday School important?
As I laid in the bathtub, I was thinking about how much I miss Sunday School. I think the last time I actually enjoyed Sunday School was when Ann Antrim was teaching it. Ann didn’t stand up and do all of the talking. She spoke softly and she would give everyone a chance to share their thoughts. I really like that kind of Sunday School.
As I was looking back to when Ann Antrim was still with us, I always felt that I learned more because of her style of teaching. Sunday School is a place where I’ve been able to really dig into the Word of God. As we sat around the tables downstairs there were those who helped me understand what the passage was meaning. Most of the times, others had the same problems that I had. Dena Allen and I would spend hours talking about whatever we didn’t understand in Sunday School.
For me I think the best way for me to learn is in small groups. We would take turns reading Scriptures and we all had the chance to get involved. We weren’t just sitting there. Her style of teaching was very much like the way we had Sunday school in the Nazarene Church.
Since everyone has our own Sunday School book, I would read ahead for the next Sunday and if I had questions I had them ready. By doing that, each day of the week I would spend reading the Bible and studying the Word. When classes are to big, it’s difficult to even say anything. People talk over the others. So, I don’t really get much out of bigger classes. I also don’t retain the study since it is done on the spot and there isn’t really anything to study.
I think the last time our church did that type of Sunday School was when Ellis Keck was there. Even though Ellis was the pastor, he wanted to have others teaching Sunday School or to become leaders even if they didn’t think they could. I’ve been to a number of churches and maybe it’s just the way it’s done where I live, but Sunday School is more of a lecture style. Whoever is leading Sunday School, they do 90 percent of the speaking and once in a while someone may speak up. I’ve really been wanting to find a place that does Sunday School like that.
There isn’t anything wrong with how my pastor leads Sunday school. But, for me, I don’t retain information like that. I have to see it, read it and be actively involved. I know a number of other churches that does Sunday School the same way. My daughter Jessica puts on Christian books in her car and they listen to the books that way. There isn’t anything wrong with that. But, everyone learns differently. To me it’s a bunch of talking and I get distracted very easily. I went to one church locally a number of years ago. The pastor did Sunday School where he would talk about the topic. He was just going on and on, People were getting off tract and I had no clue what the topic of the study was. I went to that church for a month, and I got tired of hearing people going back and forth.I don’t think it’s like that at my church.
I really miss a normal Sunday School where we sit around the table, pray, read, discuss and even if we don’t make it to the end of that weeks lesson, that’s OK. We continue the next week.
I find when I’m engaged in real conversations about Go and about the Word of God I have a much easier time grasping and understanding what I’m learning. I would very much enjoy have a weekly Sunday School style of study once a week. I want to contact the Church of the Nazarene to see if I can purchase some guided Sunday School lessons that I can do around my dining room table. If I can’t I also located a study that sounds interesting. If there are any ladies that I know that would like to do that, let me know.
This is the Willcox Nazarene Church where all of my wonderful memories of being baptized, meeting wonderful people. Because of this church, that’s why I go to church at St. George Community Church.
When we engage in real conversations we are opening the dialog with others who are in the class, group of friends or whoever would like to join. I wouldn’t think everyone has to go to the same church in order to worship and learn about what God has in store for all of us. I believe the Sunday School lessons are split up in three months of lessons. I very much enjoyed learning that way. Since my church is non-denominational, I don’t even think that we have a place to buy those kinds of Study Guides. I could be wrong. Maybe I will ask Pastor Ray about that.
What I miss about Sunday School is that the classes are smaller and that makes it a perfect environment to have real conversations instead of yes, no, or shaking of heads in agreement. I know I couldn’t do this kind of study at my church since I know it isn’t a church sponsored guided activity. Also, the material wouldn’t be coming from my church since we aren’t affiliated with a specific denomination. So, my plan now is to find guided Sunday School Lessons and go from there. It will probably be mid-week around my dining room table unless someone wants it someplace else.
By engaging in dialog with other members of the class, listening to their questions and hearing the answers, you learn that you are not alone in your struggles in understanding the Word and living out your faith in a world that is increasingly hostile to Christians . Those friendships will also help keep you accountable and connected to the Body of Christ, especially during times of storm and crisis in your life.
Here’s a breakdown of why I think it is very important for everyone to be going to Sunday School. Sunday School helps me and I would think most people to understand the different stages in their lives. I never understood this when I was younger. I would be placed in the teens, young adults, adults and so on. A pastor friend of mine those me that it’s important to learn and encourage others who may need encouragement from someone who may have gone through the same type of things they are. A young adult isn’t going to know what it’s like from a senior citizens point of view. They can learn off of each others experience. But, there are some things and conversations they won’t understand.
When I would go to Sunday School with Ann being the teacher, she had a way of engaging everyone and she closed that generation gaps. I did find this study lesson on Life way, so. I’m thinking on this if I can get some people involved.
Here’s a description of what I’m looking at. I would just have to figure out where to have it at since it isn’t a church sponsored Bible Study.
CHASE CURRICULUM KIT: Chasing After the Heart of God
What are you chasing?
We’re all chasing after something, something that we think will make us happy—comfort, success, a bigger house, or someone’s approval. But if we are all honest, it feels like trying to catch the wind.
A man after God’s own heart… As David’s life weaves throughout the pages of Scripture, we see he was a man who spent his life chasing after God. Chase explores the events that defined David’s life and the Psalms that flowed out of those experiences. Through David’s example we’ll discover what God really wants from us.
The lessons in this study are simple yet deep and very interactive, offering Bible study, stories, and projects to dig into Scripture and deeply engage the mind and heart. God has carved out a space in each of us that only He can fill. So whether you are running from God or working your tail off to please Him, David’s journey will challenge your view of God.
God is invisible, and yet He is the only thing we can chase that won’t leave us feeling more empty.
Study Kit Tools:
Study. The study guide uses projects, stories, and Bible study to engage the mind and heart. There are seven weeks of Bible study and an introductory session for your group.
See. Eight short but deep videos provide a starting place for meeting God and for transparent conversations. Each video is 8-12 minutes long.
Ask. Conversation cards offer questions for spontaneous and authentic discussion time. You choose the questions that speak to you.
Lead. The leader’s guide prepares you to lead this study and encourages you along the way
Sunday School is very important when it comes to my spiritual walk and anyone else’s. When we go to Sunday School it provided the tools for learning. Sunday School encourages friendships and interactions while you are studying with like-minded people. Ephesians 4:11, includes teachers within the five-fold ministry of the church. “And he gave some, apostles; and some, prophets; and some, evangelists; and some, pastors and teachers”. Sunday School and going to church is a very important part when it comes to building a stronger relationship with Christ. Pastors are called to preach the Word of God and to Shepherd the congregation.
I feel bad as I’m writing this because I hardly ever go to church because of my health. I do listen to the sermons and I also listen to the sermons that Pastor Craig from Oro Valley Church of the Nazarene in Tucson does. I have always been a Nazarene and I will always be. So, I do enjoy listening to their services when I catch it. Even if I can make it to church, I don’t go to Sunday School. Again, that isn’t because of what Pastor Ray is teaching. I just don’t learn in that format and when people talk over each other. I need something in hand to read and study, not just listening.
When I got really sick this summer and I was in ICU for at least a month, and then I was on the 2nd floor for close to 3 weeks and then the rehab center. I wanted to share just one very important part of the hospital stay and that all resolves around my grand-daughter Josalyn and her toy unicorn.
After I got out of the ICU and they moved me to a regular room I was having a lot of problems understanding who people were and I couldn’t really carry on a logical conversation. I had my cell phone with me, and I knew it was my phone, but I couldn’t remember how to dial it, who the people on my contacts are and I couldn’t text. It took me a while for the connections in my brain to work. I still have issues on some of the things.
During my confusion for some reason my focus was on my grand-daughter Josalyn. Jessica and Josalyn always came up there. Josalyn left her little unicorn with me. But, I vaguely remember talking to the Dr’s about how I needed to make sure that she could eat and that she needs chocolate milk and she needed cookies. I felt this crazy need to make sure she was OK. I remember mumbling things about her to my nurses.
One night I asked my nurse to call my daughter Jessica. I left some kind of strange message on Jessica’s phone. I may have even texted her. For some reason my focus was entirely on Josalyn, her unicorn and my pug Jasper. I kind of remember talking to my Dr’s and nurses about how worried and even scared that with me in the hospital there is nobody feeding and taking care of Josalyn.
One afternoon when my sisters Joyce, Bren and my dad came to visit me from AZ. My husband, Jessica and Josalyn was also visiting me. I couldn’t even talk much. When I did talk, it was jumbled and I couldn’t talk loud enough to be heard. And I didn’t even know what was going on. I did know that my daughters, my husband, my sisters and my dad literally filled my hospital room with yellow and white roses. They were gorgeous. I had to leave some at the hospital since I was having major allergies.
During that visit with everyone. I started throwing up blood. The nurse was telling me to calm down and to put my head in the back. She was trying all kinds of things. But, blood clots the size of part of my fist was being thrown up. Some of them went into my lungs. This all happened when everyone was visiting. My dad was scared to death. He had to leave the room. I was throwing up so much blood, it was all over my med, blankets and me. The nurse I had was off work and she didn’t tell the incoming nurse that I was having a nose bleed.
It was much worse than a nose bleed since it was being thrown up and some was from my nose. Something perforated somewhere in my stomach. The nurse that was in my room 24/7 immediately called a Dr. She knew the problem was much worse that a simple nose bleed. Within minutes they had me going out of the room and they took me to have some kind of a procedure to try to stop the bleeding. I think I was in a surgical room. As they were moving me to hopefully stop my bleeding, I wanted them, well demanded them to get me Josalyns unicorn. The nurse didn’t want to, but I guess I got pretty loud lol.
The procedures that they had to do is something I don’t remember. All I remember at that time is that I know I’m loosing a lot of blood and I didn’t know anyone could loose that much blood and still be alive. All I remember is that I had Josalyn’s unicorn and I didn’t want any blood on her toy. I was heavily crying because of Josalyn and the unicorn. They worked on me till around 3 in the morning and if it wasn’t for that unicorn I don’t know if I could have stayed focused. The pain was so bad that not even the morphine and the dilaudid helped with some of the pain. But, I think I only got through this ordeal because I was really scared of ruining Josalyn’s Unicorn. I was also praying so much. Even though I was given a ton of medications, I was still in pain, but when I asked God to protect me and to take the pain away that worked.
One of the nurses was told by the Dr to keep me calm because things were going to be bad. There was only one other way to help stop the bleeding. So, this nurse noticed how many times I mentioned Josalyn and the unicorn. I was protecting that unicorn. I wasn’t worried about me bleeding to death, but I was about her unicorn. So, the nurse got me talking about Josalyn and she wanted to hold the unicorn. That was a negative. I will hold her unicorn. But, at that moment, God put this on my heart and I haven’t shared that with anyone.
My grand daughter was with my daughter every day at the hospital. But, Josalyn looks exactly like Jessica did when she was a baby. I know people will think I’m nuts. But, in my mind I needed to protect Josalyn because I was thinking she is my daughter Jessica. I also use to collect unicorns. When I was worried about Josalyn needing to eat and drink and taken care of because it is my job to do that. But, I honestly think that during my hospital stay, I was thinking Josalyn was Jessica.
I wanted to share this video of my grandson JJ and Josalyn. I didn’t want to leave him out.
Around 3:00 am, I was back in my room and the unicorn had absolutely no blood on it. I did loose a lot of blood. They had to give me a couple blood transfusions. On that night they had to and then about a week later they had to give me more blood. I don’t remember anything from that ordeal except that there was blood all over the room, the floor, the bed, my gown, the Dr and the nurses even had to get clean cloths.
The nurse that I had when the bleeding started should have let the oncoming nurse know that I had a problem. I really couldn’t talk because I was throwing up big blood clots from my throat and nose. I really appreciate those who helped. I know there were a lot of people in the area they had to take me and I thank God that is had Josalyn and her unicorn to help me get through it all.