Going Home- Part 2
This is part two of my Guillian Barre Awareness Blog Post from 2 days ago. The most important part will be part 3 and that is how God can get us through anything if we only have faith and beleive. This is the paragraph from the last one.
In order to go home, my Dr’s told me that there had to be someone with me at all times since I wasn’t out of the woods. I also had to have my house approved since there were so many things that could happen in a moments notice. Someone also had to be trained to help with going to the bathroom, bathing, helping me roll over in bed. When I came out of the hospital I was a size 0 and I would guess about 85 pounds. So, Chuck had to make sure everything was ready for me to come home. He had to also make sure that I had the means to get medical treatment since I was a minor.
So, Chuck arranged for me to be dropped off at his friend’s house, which I did know them, but not well. He had to be on base at 4:00 Am every morning, unless he was off. So, we left the house around 3:15 and he had to carry me the whole time. He carried me into the truck every morning. Lana gave him a key to her house in case she was asleep. She arranged for a bed to be in her living room. He brought me in and made sure I was in bed, brought lunch over if I got hungry.
Chuck would check in throughout the day to see how I was. Lana had to have some training in order to help me. She would help me sit up since I was getting sores from laying down all the time. I couldn’t feed myself. So, she would feed me. Oh, and by the way, I was also pregnant with my daughter Jessica. She had to help me go to the bathroom and brush my teeth. When I wasn’t at her house, Chuck did everything for me. When I say everything, I mean everything.
Like I mentioned before, Chuck was in the Army. I had to have medical since I was still needing major medical things. While Chuck was on High Alert , which means he can’t go anywhere that is over 15 miles. When he got the call on his day off, he was stressed. I asked him why and it was because of me and how since I was still in a battle for my life, we needed to find a way to get medical treatment. We were planning on getting married in December. Instead, we pushed it up. Because of him being on High Alert, which I think it was during tole cold war, we decided that we would get married. It was the best way to get me medical coverage. So, that’s what we did.
Chuck and I already had our license and we didn’t have anything to do. So, he lifted me up and put me in the truck and we decided to get married. We made it to Belton Texas with 30 minutes to spare. Chuck had to carry me into the court-house and he even held my hand to help me sign. My parents about two weeks ago signed the permission slip since I was 17. He did find an office chair with wheels to help me. When we went before the judge he asked me if I was positive that I wanted to get married. I wonder if he thought Chuck was trying to force me since he had to help me hold the pencil.
I’m sorry this is going on for so long. But it’s important. Chuck and did get married on the day before Halloween. Chuck always says that we got married then so I could ride my broom. Chuck has also said he married me since he felt sorry for me lol. Which isn’t true, lol. But, my mom did tell me when we got married she would send us 200.00. We called her when we got home. We needed the money because my stuff is very expensive. Little did we know that Scott and White contacted the Shriners about my case and they covered every penny of my care since I was a minor. That was a major relief and Chuck was prepared and has been paying for everything for me even though we weren’t married.
Chuck and I went to the base. We borrowed a wheel chair to get around. We didn’t even have the money for that. We showed them our ID and the marriage certificate. The timing was great since now I had full medical coverage with the military. I was readmitted into Darnell Hospital at Fort Hood. I wasn’t on life support, but I was still paralyzed and I was in the hospital for 3 months. Over the course of a year, I spent 90 percent of the time there.
Chucks CO arranged for Chuck to go on Special Duty so then he would be close to home in case I needed him. When I was in the hospital he made sure to visit before he went home. I honestly don’t think that there would be many people who would have stuck around. We have been married 38 times. He has stuck around for all of the things I have gone through. I have had Guillian Barre Syndrome 3 times which is why they have changed it to CIPD which is the chronic form of Guillian Barre Syndrome. About 12 years ago or longer I was diagnosed with Myasthenia Gravis. There has been a number of other medical crisis that many would have walked away from.
I wanted to keep this post short and I will just touch on this since I will cover more of this in a separate blog post. GBS is an auto-immune disease and those who have had it or have compromised immune system. For myself the second and third time I had it was because I was around someone who had either a cold or the flu. While the cold, flu or other virus doesn’t affect some other than being sick for a short time. For those who have a compromised immune system it could land them in the hospital or they can die.
I think the second time I was paralyzed in the late 90’s which would be 98 or 99 it was from someone who came to my house with strep throat. I spent most of that year in the hospital where I live. I missed almost an entire year of being a part of my daughter’s life. When they seen me, it was from them coming home from school and they had to see me in the hospital or the rehab center. During lunch breaks they would walk over to the hospital and have lunch with me. I shared this because something as simple as strep throat almost costed me my life. If you are sick and you know someone with a compromised immune system, please stay away. If you are sick, stay home. If you must go out, wash your hands.
Links to Informational Websites for Guillian Barre Syndrome and CIPD
- Guillain-Barré syndrome (GBS) – National Institute of Neurological Disorders and Stroke
- Guillian Barre Foundation/CIPD GBS/CIDP Foundation International
4 thoughts on “Part 2 from GBS Awareness”
First, your Chuck is one of God’s angels. To willingly do so much for you out of love when your own parents pretty much abandoned you is nothing short of one of His miracles. I’m so glad you got married so you can get the military benefits, as well as the PX and commissary. They save me momey every month. My husband served twenty years, then died at 46. Our children were still young, so I had to raise them alone, with help from my mom, who stayed with them so I could work. She was another angel. So all the doctor’s visits, tests, MRIs, CT scans, two hospital stays through the years cost me nothing. I know how lucky I am. Have you checked out Guillain-Barre Survivors on Facebook? I felt so alone when I got this. Found them last year. There is a whole community there, people all over the world who have this disease that is so rare only 1 in 100,000 people gets it. Stay strong. It’s good you have this blog to vent. I was doing mine to my sister-in-law till I found the Facebook group, and now yours.
CHUCK IS A SAINT. GOD BLESS YOU BOTH. IT HAS BEEN A LONG, HARD BATTLE, BUT YOU ARE OVERCOMERS. PTL I HAD SIMILAR EPISODES DEALING WITH MULTIPLE SCLEROSIS. COMPLETLY PARALYZED AT ONE TIME. NO MORE SQUARE DANCING…I BELONGED TO THREE SQUARE DANCE CUBS IN SAN DIEGO…BUT I CAN STILL DRIVE AND I DON’T STAY HOME. GOD HAS BEEN VERY GOOD TO ME..I HAVE NO PAIN NOW. PTL.
Not sure if he would say he is a saint lol. I told him he needs to read what I wrote about him in case anyone says something to him. He didn’t think he did anything special.