Our way of living and our world has become face-paced and people want instant gratification. Twenty years ago the internet would take anywhere from five minutes to thirty minutes. There was no WIFI connections. We had AOL as the main internet company that most people used because they would send free CD’s in the mail and they would offer 100 free hours of internet. The speed was either 56K and it took a while to connect. We thought we had everything at lightening speed and we could fill our time with learning about anything we want to learn. For those who have never heard what dial up sounds like, you can watch this 30 second video.
What we thought was exciting and educational, the internet ended up being a curse in many ways. Hours were wasting away because of all of the things we could fill our minds with. Everything became fast-paced and we had instant gratification. When we had to wait the extra 10 minutes waiting for a web-page to open, it become frustrating and at times painful. We had countless possibilities and opportunities. While time was being spent spending hours and sometimes days in front of the computer screen, life was passing us by.
I would spend time chatting to people who I didn’t know in a chatroom in Angelhaven. I didn’t know the people on the other side of the computer screen. I spent more time speaking to strangers then I did with my family. Eventually the chatroom’s closed and Myspace took over. Myspace was all over the place. Pictures can be shared and conversations galore. And then more time was being spent away from our real lives. Hours and days passed quickly. Facebook ended up taking over the internet by storm and even more hours and days are spend away from real life.
Then there came a time when my daughters were graduating and they got married, and now I have grandkids. It seems as if the time being spent with loved ones are in front of the computer or smart phones instead of spending time together face to face. I don’t think all of these advances in technology is a good thing. These advances have taken away real relationships in our every day lives.
I’ve found that since I have a number of medical problems prevent me from regularly going to church. So, instead I watch church on youtube or on ROKU. I watch Oro Valley Church of the Nazarene in Tucson, AZ or Sutherland Springs First Baptist Church in Sutherland Springs, Texas. While I always feel blessed from their services, it isn’t good to not worship with other Christians in our day to day lives.
One of the sermons I was listening to at Oro Valleys youtube channel was about how we should be patient while were waiting for God to direct our paths. There have been a number of things that I have been praying to God for answers. I do feel like He has given me those answers.
While I was praying and searching the internet for Bible verses, I realized that even though our experiences may be different, we all face crossroads and we face seasons of waiting at some point in our lives. For about a year and a half, I’ve been on the high speed internet connection. our WIFI connections are now 500 Mbps and takes literally a couple of seconds to connect to the internet. But, this is one of those times it’s best that our lives should be on the 56K dial up connection. Instead of wanting everything in seconds, we should be taking it slow.
If you’re struggling now, and you haven’t heard from God yet ( or maybe you haven’t accepted His answer), I’ve found a few Bible verses that have helped me find comfort and hope. God has a plan for all of us and when I’ve been feeling stuck, I hold onto these words and they bring me hope that brighter days are just ahead.
Isaiah 40:31“But those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.”
Lamentations 3:25“The Lord is good to those who wait for him, to the soul who seeks him.”
Psalm 27:14“Wait for the LORD; Be strong and let your heart take courage; Yes, wait for the LORD.”
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 the Rainbow Bridge. But, I’m heart broken over it and I he needs me to be there, even though a part of my soul is going with him. My dog Jasper is my shadow.
I rescued him from these people that was getting rid of him because he sheds too much. my daughter Jessica found him for me. If I didn’t take him, they were going to lie to the animal shelter and tell them that he bit their kids. Jasper doesn’t bite at all unless it’s food. Jasper did knock the kids down while playing. The kids would run around their house and Jasper would run after the kids to play.
This picture is what happens to animals in shelters who are destroyed because they would be considered unadoptable or no body would adopt them . Had it not been for me learning the truth about Jasper would have been killed just like these dogs. since the people said that Jasper bit her children, he would never have been adopted because of the lie and he would have been murdered the moment he arrived. Animals who are considered dangerous or unhealthy have no chance of being adopted. The only chance Jasper would have had is if the shelter seen for themselves that they were lying. But, if an owner brings their pets in and says they bit or was aggressive, they have to do what the owner said. Our shelters are no kill now, but it wasn’t until 3 or 4 years ago.
People like that makes me sick. But, I am thankful at the same time. if it wasn’t for them, I would never have gotten to know him and to have him in my life. Since I know that he is going to be going over the Rainbow Bridge soon, I’m trying to build lasting memories of Jasper. I’m taking lots of pictures and doing videos of him. I always watch his food intake and now I’m letting him eat what he wants and as often as he wants. I’m not going to tell him to not eat what he wants. I don’t know how I’m going to get through this. I have many medical issues and my blood pressure goes up to 230/120 when I’m stressed or running around. I don’t even know how I’m going to be.
Jasper eating a cookie
Jasper in my robe
The three pictures above is when I first go Jasper. The middle one is Jasper eating a cookie that I was eating. I was training him or I thought I was. Instead, he was training me, lol.
I hope people don’t get upset when I constantly talk about Jasper. Our pets are not just pets, they are family. I’ve also had people tell me that he will be in a better place. I just hope they don’t say that when he goes to sleep. The better place is with me, not anywhere else.
I do feel that when animals die that there is a special place for them. God created all things. I get very frustrated and upset when people say they just die. If animals can tell when we are sad or need help, they are there. Their love is unconditional, not like humans. Animals have emotions, they cry and smile. They demonstrate love and compassion. There are times when I’m having a bad day and I get upset with them because they either pee’d on something, got in a fight or whatever, and yet they are forgiving and non judgmental.
When I get upset over Jasper barking all the time, I feel so much guilt. I tell him or whichever dog we have that I’m sorry and I shouldn’t have gotten mad and I shouldn’t have yelled at them. I know that I will carry a great deal of guilt when he’s gone. I know he doesn’t understand and probably can’t hear me when I love on him and full blown tears that’s I’m so very sorry that I got upset.
When I first got Jasper( October 13, 2011 ) his name use to be Buddah. As a Christian, Budda was not an option. My daughter Jessica actually chose Jasper’s name. When I brought Jasper home, he immediately became my shadow. I actually thought Jasper would attach himself to Jessica since she held Jasper all the way home. Within an hour or two, Jasper knew I was his mommy. He follows me to the bathroom, outside, all over the house and so on. I use to let him sleep on our bed, but I stopped a while back since he started having problems getting on and off the bed. We bought stairs f or the bed, but he still had problems. We took the stairs down and stopped letting any of the dogs on our bed.
The reason I did that was because jasper would cry when he would see the others on the bed and he couldn’t. So, we just stopped letting any of them on there. if one can’t, then no can.
Jasper loves watching TV and himself. I did a video of our dogs Mattie and Maverick. Mattie I rescued from Arizona Almost Home Boxer Rescue in Arizona. Click here to see the video of him watching Mattie and Maverick. I have many videos of Jasper watching TV or videos. I will be sharing some of those below. I remember when I bought his first snoopy dog bed and all of the things. I knew I was going to have to do a memorial for Jasper, but I don’t want to do it right away after he goes to the Rainbow Bridge, I wanted to do this while he is alive.
Jasper Misses His Buddies– Jasper is watching a video of Maverick and Mattie. We got Jasper about 2 months before Maverick and Mattie died from tainted dog food.
I was talking to a friend who lost his dog Anna and his cat Bart recently. I have horrible memories of when I had Brandie, Maverick and Mattie put to sleep. I can’t watch any videos of animals being put to sleep. That’s because all I think about is when I had to put Brandie, Maverick and Mattie down. I have major anxiety over it and I have major meltdowns. I asked Eric if he was with Anna and Bart when they were put down. he said that he wasn’t. he couldn’t emotionally be there. Eric is one of those guys that I have a ton of respect for and that’s because of his love of animals, family and friends. Eric wears his heart on his sleeves and I appreciate that. So many people don’t care and it’s nice to see the love for his pets and others.
Eric Dodge is a Country Music Star, Author and Speaker (Check out his sites). While you can listen to Erics music on many outlets, he doesn’t make anything when people listen for free. So, let’s send a little bit of love his way and purchase his music.
When he said he wasn’t there when Anna and Bart were put to sleep, I 100 percent get it. I have been thinking about how was I going to handle watching jasper put to sleep because of how I had so many problems when I had to be there for Brandie, Maverick and Mattie. To this day, I still have nightmares of that.
I think for myself I have a lot of emotions with seeing them dye in front of my eyes and in my arms reminds me of my Grandma Grace. This may sound crazy, but when my grandma died and all of us kids went to her funeral, my mom made us go up to my grandma and kiss her on the cheeks. I was only 10 yrs old. My grandma gave me a dog as an early Christmas gift. His name was Spartacus. I only had him for a week when my grandma died on December 5th, 1973. After grandma died abut a month or so later, some boys took my dog and threw him in the river in the middle of winter. We lived in Indiana and Sparticus died in front of my eyes and in my arms. The boys dad thought it was funny and my mom said, ‘OH WELL”. Sparticus was the only thing I had that my grandma gave me. Spaticus was a little Pekingese.
The picture above isn’t my dog or cat. I couldn’t put pictures of my dogs that we had to put to sleep. I have a hard time seeing our 4 legged family members dead.
Anytime I’m with one of our pets (family members) when they die, my heart and mind goes back to that time. As I have been probably over thinking this, a show that I was watching always comes to mind and this is it. But, then I think about how a vet show that I was watching was talking about how. Most of the quote below I don’t agree with. I think there are pro’s and cons when it comes to having to put your loved one to sleep. I think it’s them guilt tripping. So, use your own judgement and don’t let anyone guilt you.
“I beg of you DO NOT LEAVE THEM,” “Do not make them transition from life to death that has those who they don’t know. He also said that our pets will be searching for you if you just drop them off and then they die with nobody knowing them. They will think you are ABANDONING THEM.
This statement below is something I think the vet is wrong. There are times when people can’t be with their beloved pet. There are many reasons why. those reasons are maybe they can’t physically be there. For example an older person, medially unwell, out of town and a whole host of other reasons.
My God, can you imagine? I’m sorry, but if the thought of your beloved pet’s little face scanning a room full of scary, unfamiliar people, trying to find you, the human it loves, in the literal last moments before its death doesn’t move you to tears, you have no business owning an animal in the first place.
When I heard that, I had a tremendous amount of guilt. I love Jasper so much and all I can imagine is him being afraid and abandoned. I’ve gone through it many times and for some reason, this time it’s different. I loved my other dogs so much and I was there for them. I was also there for pets that we rescued that had to be put down because of how they would bite people and children. They were hostile and very aggressive. Even though we rescued them a week later, we couldn’t safely adopt them out. Or we had to put down sick dogs that had parvo or other medical conditions that they wouldn’t survive, so there is no need to make them suffer.
Out of all of the websites that I have been to that discusses euthanize I liked this one best and it discusses both sides. Click Here: Vet Street
In closing, this is one of the comments that the vet shared on the video and the reason I will be there with Jasper. Even though I may have to go to my Dr so I can get a prescription for anxiety. I know I will have it big time.
From Vet Show- Don’t deny your animals the chance to feel as safe and loved in their last moments as they have their entire lives. They give us all their love. They deserve this.
This is going to be a series of blogs about our dogs and why we rescued them from deplorable and abusive homes and hoards. I’m doing this series because I know there are some big changes coming in the next week or two. The pictures below is of Parker when we first rescued him and recently.
Parker’s Story- A Handful Of Cuteness
Parker Otober 2013
Parker has the cutest face
Parker- Cute Face 🙂
I’m sure many who knows me personally and on my Facebook pages knows about my dogs and how we rescue them from bad situations such as hoarding groups, high kill shelters and so on. We’ve rescued boxers, pugs, cats, mixed breeds, birds, horses, goats, rabbits, lizards and other animals that didn’t ask to be put in dangers way.
Usually when we rescue an animal, we always look for a good home for them and homes are screened and the people interested are also. When rescue them, find good homes and that makes it so we can rescue another animal that’s being abused. But, about 5 years ago, we decided to not re-home our pugs and our mixed pug/pekingese. And that is for the most part because Jasper, Parker and Henry became more than rescues, they became family. We always feel that all animals are more than animals, they are family. Well, not snakes and spiders.
We rescued Parker in October of 2013. That’s by the boarder of Mexico and 2 1/2 hours from Tucson. My parents lived in a tiny little farm town called Elfrida, AZ. My mom and sister Brenda adopted a few puppies from this group. I asked my mom if she would get me information on the hoarding group. She did and these people at I would say well over 50 dogs and I have no clue on how many cats. These people had Pekingese’s, Pugs, Chihuahua’s and not sure what else. The county told the people that they had to get rid of all but 10 of the dogs and all males had to be fixed. I called the lady and told her that I’m going to go visit my parents and if they needed homes, then I may bring a couple back to Utah and re-home them. I had no intention of keeping them.
Douglas, Az is about 12-14 hours from where I live. But, I went anyhow. I met the lady and I was shocked at the conditions. All of these dogs lived in horrible condition’s and it made me sick. After seeing the condition’s, I realized I couldn’t take more than one back. That’s because the medical needs for all of those dogs could be dangerous for my dogs. So, I did find Parker. He had one eye that he was blind in and he was in decent shape. With my husband and I living in a condo, we couldn’t take that many animals. St. George only allows 2 dogs and I had to get a special permit for Parker.
Since I volunteered for a rescue group in Arizona I was able to use the 501C3 status as a non-profit. But, we brought Parker back with us. He was terrified of everything. He had extreme separation anxiety. In 3 days, he ate doggie doors, door frames, escaped out of enclosed and locked crates. We took him to our vet and they told us that Parker was castrated like cows are castrated. The vet told me that they only seen that in one place and that was in Douglas, AZ. When I told him that’s where we got him, he wasn’t surprised. While we were at the vets office we also made sure that he had all shots. The lady said she gave them shots, but there is no way I would believe that. When the vet said he was castrated, it broke my heart. I couldn’t let Parker really hang out much with Jasper and Patsy. I’ll go into her story also in this series. I just want to give each of the dogs, their own story.
Anyhow, since we intended to find a good home for Parker, that was almost impossible because of his anxiety. He was highly destructive and afraid of anything and anyone. For the drive back home from Arizona, he was in my arms and had his face hidden in the crook of my arm. he wouldn’t eat, drink or anything for the 14 hour drive. He was terrified. Once we got into St. George we only had 5 minutes till we got home. But, as soon as we got off of the freeway, Parker lifted his head up. He must have known we slowed down and stopped at the light.
I told my husband that once we get home, we need to make sure to put Parker in the dog crate that we brought with us in case he tried to dart. We only used the crate while we were in the hotel in Tombstone and we learned really fast that Parker runs and hides. He ran under the bed and positioned himself so we couldn’t get him. Once we finally caught him, we made sure to put him in there and then drove the 3 hours to Phoenix and we got him a harness. While he was in the crate, he was literally trying to escape and he was flinging his crate with him in it all over the back of the car. Since he was doing that, we had to get a harness where we can hold onto him and it hand a handle.
It took us a year to get to the point where he wasn’t afraid of us. He still trembles if we raise our voices and he hides. Every time we thought he was ready for a new home, he was so afraid to even interact with anyone unless it was our family. My sister Joyce wanted him and we did let her have him. Joyce absolutely loves Parker. The only problem was her husband is a truck driver and Joyce and Ira took him on the truck with them for a few weeks. When they came home from being on the road, Parker was skin and bones. That was because he was very nervous and he is terrified of noises. Semi trucks are very loud when it comes to airlines, horns and all of the road noises. From my understanding he was doing what he did when we first rescued him.
Even though my sister loves him, it wasn’t good for Parker. He was starving because of his anxiety. He didn’t want to even go potty when the truck was stopped. Now, my sister has visitation rights lol. Even though Parker loves Joyce, we realized that we could never re-home Parker. We’ve had Parker for 6 years now and he isn’t going anywhere. Parker is our problem child. The lady that we got him from said Parker was 8 months and he looked like he was still in his puppy phase.
I want to close this by saying that if anyone is looking for a pet, please try to rescue one. Animal shelters normally have all types of animals. I know many people wants puppies, but if you can save an animal, please give it a try. I’ve found that instead of me rescuing them, they rescue me. There are many who will tell people to adopt instead of shop. There are benefits to both and even the animals in pet stores need to be rescued. I’ve bought before and usually it’s because I know the people who are breeding. But, I will always choose to adopting since shelters will kills animals if they aren’t adopted really fast. Usually they give them 5 days.
In the next day or two, I will share another rescue.
For a very long time I have been in the battle with our cable/internet company. We have our basic cable and our internet with TDS. This is their website and I’m only putting it here to let people know to be aware of them and to protect themselves from overcharges, hidden charges and charges that are added that you never asked for. TDS Website…
On Facebook I always see people asking other members of the Indoor Yard-sale page if they know of any good internet companies. They can expect a lot of experiences and many will comment the same way that I do. That comment would be that if they want to be cheated and lied to, then TDS is the place to go. They should try any company other than TDS.
My first run in with them was when they were still called BAJA Broadband. The company was sold to TDS in 2013. I found an article about the sale and you can click on this link. TDS buys Baja Broadband. BAJA had a lot of issues and in my opinion I thought it was more about customer service issues. Also, while it was still BAJA Broadband, that’s when we found out that the salesman that came to our house to sign us up also signed us up for a package that includes cable, with the sports package and 2 premium channels (HBO and Showtime), internet and a phone. My husband and I don’t watch sports and never agreed to subscribe to the sports package and we didn’t watch HBO or Showtime. We had basic cable, not all the channels we don’t watch. With the phone, we never even knew we had the phone. They told us that it is a good thing to have and we could talk to people on our computer. But, never ordered the phone and a number of things.
Since I worked in Sales and with customers, I can tell you first hand that if I was offering bad customer service to a customer, that they would more than likely tell their family members, friends and anyone who will listen. Then those that heard about your experience will share that with anyone and anyone. So, that one bad experience has been shared by not just the 10 or so people you told, but now those people are sharing with many others and it just gets worse from there. Then you have the age of the internet. People can tell anyone and everyone online, offer reviews and so on. So, If I gave someone a bad experience, then I would say that withing a day, over 50 people has heard of how bad I was and they would never do business with the company I worked at. I could also loose my job if the owner wanted to fire me. I found a website that describes this and it breaks it down on how dangerous it can be for a company who has bad customer service. This is the article that was written that shows the The Real Cost of Bad Customer Service (And How to Avoid It).
I went into the then BAJA and talked to the lady that is at the front desk/computers. She told me that I did have it and that it is this amount of money. I was dealing with this woman for three months. Finally someone in another room was listening and there was a lot of customers listening to this discussion. I explained to that lady that I never ordered those services and I’m not paying for what I didn’t use, know about or ask to have. She took me to the side and tried to get me to speak quietly, and that did NOT happen. I filed a report and she said she would talk to corporate and look into it. I figured she was just trying to push it under the rug. So, I made sure that she filed the papers while I’m watching and i wanted to hear her tell the gentleman on the phone what is going on and I wanted it on speaker phone.
I made sure they did it that way because I worked in customer service for 20 years and I know how people try to calm people down by “acting” like they are going to take care of it. I also got the guys name and number at corporate so I could follow up. I was totally shocked when I got a call from him a week later and then I received a letter in the mail a few days after that. They did a full investigation of what happened and they told me that they went back into my account and they checked to make sure that we never even tried to use a phone and there is no history of premium channels even being watched. Then he told me that they are reimbursing the overcharges that I was charged. I was expecting a couple of hundred. But he said I was overcharges $611.00 because of the things the salesman and the employee that worked in the front of the office. I was shocked. I know I was overcharged, but I felt stupid that I allowed these people to charge me so much.
And lately I have been feeling cheated again and my guess is that a lot of people are feeling the same way. Anytime I go into the TDS office, there are many in line that have their equipment in hand and they are canceling their service. Last month, there was a little old man that was just ahead of me and he had his equipment in his arms and was cancelling their service. The older man lives in an assisted living place and he didn’t realize he was being charged for things. He was yelling and very upset. BTW, the same lady that I was upset over the phone thing and overcharging is still working there and this poor man was livid. She added the phone to his internet. He never used it and never ordered it. Where he lived, cable was included. He was only subscribing to internet. I did talk to this man and I told him the same happened to me and with the same lady.
Since I did sales for so many years, I know that they earn a commission if they sign someone up for the service and for add ons. I know without a doubt that the woman that I tried to get help with my problem from is getting commissions for all things she up-sales. A friend of mine worked there and she didn’t up-sale services like the phone, higher speeds for internet and whatever service they offer. But, this gentleman was on his phone calling his lawyer right in front of this woman. Everyone could hear what was being said and oh man, I’m sure he is going to be a thorn in their side, even more so than me.
Then last week I called TDS to get a break down for my bill. For some reason I’m paying over $140.00 for basic cable and internet. The same lady again that works there refused to give me a breakdown of my bill. She said that she didn’t have the capabilities to view what all my services are and the charges. She said she can print me out a reciept and she gave me an 800 number to call customer service and to see if they will cut my bill down. I’m figuring she works in customer service, she has the computer in front of her, so she should be able to see what everything is on my account. She knows I’m not one to be quiet since I’ve called her out many times. I have no clue why she is still there.
The person who I called at TDS gave me the run down and said that they can put everything in a package and it would drop the price down. When he told me that our basic cable is around $43.00 and then there is the charge for the DVR rental and that is $13.00. Then there are 2 additional charges for the DVR and one is for us even recording and I can’t remember the other charge that is attached to the DVR. But we only have 1 DVR and we have regular boxes for our other 2 TV’s. There were also a few other service charges and I can’t remember what they were. So, I was being charged a little over $100,00 for only cable. That includes no premiums. Our internet is a bit over $40.00 and we also have a fee for the modem.
I told the man that I’m trying to make sure if it is cost effective to keep our cable. he tried to offer me all kinds of discounts. I let him know that My plans are to turn in all of my boxes and to cancel the cable. I don’t have any trust in a company that over charges and takes advantage of people. I also told him that they may want to look into those who work in customer service at our local TDS company. I will be keeping my Internet and since I already subscribe to HULU Plus, I just bumped that up so I now have all the channels that we have now and those channels we watch. We can also have a DVR. In order to get HULU Live, it was just $30.00 more than I’m already paying for HULU.
I told the man that I was talking to that if they were honest and treated customers with respect and not cheat people then I would recommend them to those asking. But since I’ve had so many issues with them, there is no way I could ever recommend them.
In closing this blog out, I hope that people pay close attention to their bills and if something seems off, don’t be afraid to stand up for yourself.
I wanted to put a disclaimer on this post. I did a lot of copy and paste for this blog post. Not all things since I shared a lot about my personal journey. It’s easier to describe what’s going on by sharing the actual information. Since I have a hard time remembering how to word things or to describe things, I figured it’s easier to put the correct info on this post.
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 explain 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
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 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.
My grandparents house 1960-70’s
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.