I've been home for five days now. The first night at home was very miserable. I had been in a hospital bed for days, so when I spent several hours sitting in a wheelchair for my little man's birthday, I was hurting. But, I was so excited to be home I didn't really notice until bedtime. When it came time to be still I realized how bad my feet hurt...which led to a sleepless night.
The pain in my legs has let up some, but my feet continue to ache, burn, freeze, tingle....you get the point!
I'm using a walker to get around from one room to another, but for the most part I'm in a chair with my feet above my heart. You would think it would be a nice break, but after a day of it, I was ready for something a bit more entertaining than watching TV. However, I quickly realized I'm not quite ready to go much farther than the bathroom!
After being home for 3 days I decided it was time to try and walk without my walker. I was able to walk across the living room. I was extremely uncoordinated and shaky, but it felt good to prove to myself that my feet still work....a little.
Today is day 5 of being home from the hospital. I have not started therapy yet, but I talked to my neurologists office today and they are working with my insurance and getting it set up. I'm anxious to get started. I'm doing stretches and trying to push myself a little at a time at home, but I know once I start therapy I will be able to progress faster. So far, I've felt like I have improved a little each day....until today. I'm not sure what caused the struggle, but my knees just didn't seem to want to let me move today. I haven't tried walking on my own in a few days, I've stayed on my walker anytime I get up. But today even my walker wasn't enough to keep me up. I fell in the hall on my way to the kitchen this afternoon. I was walking just fine, and bam...I'm on the floor. My oldest son came around the corner and said "Mom, where is your phone? I'm calling Dad!" I was able to get up on my own, so we didn't have to call in help! It happened three more times before my husband got home from work, so I decided it was time to sit down and stay there!
I was extremely frustrated because I felt like I was getting worse instead of better. But, after calming down I realized that I'm going to have days like this from time to time. I know it doesn't mean I'm not getting better.
I want to record/blog about the good, the bad, and the ugly things I experience with GBS because it could be helpful to others who are going through the same thing. When I first heard I had this syndrome I searched and searched for information. I found several blogs and stories of people who had GBS and it was helpful to read how it impacts everyone so differently. Initially, I wanted to start this blog mainly as an outlet for me, this is a way for me to express how I'm feeling at each stage of this journey. I also want to be able to look back and have record of my progress. But, if I can also help other people by telling my story, then that is just an added bonus!
Tomorrow is day six of being home from the hospital. I am hoping to have a better day and stronger knees!
Monday, June 27, 2016
Make Yourself at Home
Because I was told I would be staying a minimum of five days, I wanted to get my stuff organized, and I wanted my room to be as enjoyable as possible. I made a list for my husband of stuff to bring from home, and my sister in law a list of things I needed from the store. She helped me organize my stuff in totes and fill my closet with clothes that I never got to wear because they made me wear the fashionable hospital gown the whole time. (Ok, she did it all because I couldn't get out of bed!)
I spent most of my time during the day coloring in my new adult coloring books. I was nervous about the tingling in my fingers and was told that writing and coloring, etc would be helpful. I had my sister in law and other visitors hang them on the window. It cheered me up and the doctors and nurses said it made them smile each time they walked into the room.
Each night from around 9:00 pm-1:00 am I received immunoglobulin through an IV. The first three nights it kept me awake. By night four I was able to sleep through it. GBS causes fluctuations in blood pressure and heart rate. Because I already struggle with high blood pressure, this was a big issue during my entire stay. They tried several different medications, the day before I left they finally had it back to normal! My legs and feet continued to hurt, especially my feet. I couldn't even have a sheet touch my feet, it felt like the sheet weighed 100lbs.
On day two I was informed that I would start physical therapy and occupational therapy. I hadn't been informed much about what the timeline would be as far as when I would "get my legs back." I naively thought that after 5 treatments I would be back to normal. It was a little shocking when I was told I would probably go home in a wheelchair and have a month or two of PT and OT. At that point I started doing a lot of research and realized this journey could take a lot longer than what I expected. I had to come to grips with the idea that a wheelchair and walker would be a part of my life for a little while.
My sister in law stayed with me three nights, my husband stayed one night, and I kept myself company one night. My SIL is a nurse and it was so helpful to have her around. That poor girl had to help me with everything from handing me stuff off my shelf, to getting out of bed, to walking across the room to use the bathroom! She was a huge blessing to have around for three days! My husband had our boys the first few days and my parents kept them the rest of the time I was in hospital. I had several visitors which was so nice because I was really bored most of the time! I knew I looked awful, and I felt awful, but I didn't care who saw me because I enjoyed the company!
I had some hard moments during my stay. It is scary to not be able to really feel your legs and not be able to walk. My blood pressure was a battle, which was a constant frustration. The time during the day when I was alone I had a lot of time to think about what was going on, wondering about all the what ifs. I'm typically not much of a crier, but I produced some tears during this whole ordeal. Some of those tears were from being nervous and scared about healing, but some were happy tears because I realized just how lucky I am to have such a supportive group of people around me. My family was amazing during my stay, I seriously think I could have asked for a new car and someone would have come up with one! (Dang it, why didn't I think of that?!) My friends and church family were an amazing support too! They were praying for me, taking my family meals, and visiting me. As much as I hated being in the hospital and hated the situation, it was a great reminder of just how blessed I am.
On day five I was discharged. It was my youngest sons birthday, so I was thrilled to get out of there and see my birthday boy! We met my parents and siblings and had a quick birthday party for him, then headed home! It felt great to be home sweet home!
I spent most of my time during the day coloring in my new adult coloring books. I was nervous about the tingling in my fingers and was told that writing and coloring, etc would be helpful. I had my sister in law and other visitors hang them on the window. It cheered me up and the doctors and nurses said it made them smile each time they walked into the room.
Each night from around 9:00 pm-1:00 am I received immunoglobulin through an IV. The first three nights it kept me awake. By night four I was able to sleep through it. GBS causes fluctuations in blood pressure and heart rate. Because I already struggle with high blood pressure, this was a big issue during my entire stay. They tried several different medications, the day before I left they finally had it back to normal! My legs and feet continued to hurt, especially my feet. I couldn't even have a sheet touch my feet, it felt like the sheet weighed 100lbs.
On day two I was informed that I would start physical therapy and occupational therapy. I hadn't been informed much about what the timeline would be as far as when I would "get my legs back." I naively thought that after 5 treatments I would be back to normal. It was a little shocking when I was told I would probably go home in a wheelchair and have a month or two of PT and OT. At that point I started doing a lot of research and realized this journey could take a lot longer than what I expected. I had to come to grips with the idea that a wheelchair and walker would be a part of my life for a little while.
My sister in law stayed with me three nights, my husband stayed one night, and I kept myself company one night. My SIL is a nurse and it was so helpful to have her around. That poor girl had to help me with everything from handing me stuff off my shelf, to getting out of bed, to walking across the room to use the bathroom! She was a huge blessing to have around for three days! My husband had our boys the first few days and my parents kept them the rest of the time I was in hospital. I had several visitors which was so nice because I was really bored most of the time! I knew I looked awful, and I felt awful, but I didn't care who saw me because I enjoyed the company!
I had some hard moments during my stay. It is scary to not be able to really feel your legs and not be able to walk. My blood pressure was a battle, which was a constant frustration. The time during the day when I was alone I had a lot of time to think about what was going on, wondering about all the what ifs. I'm typically not much of a crier, but I produced some tears during this whole ordeal. Some of those tears were from being nervous and scared about healing, but some were happy tears because I realized just how lucky I am to have such a supportive group of people around me. My family was amazing during my stay, I seriously think I could have asked for a new car and someone would have come up with one! (Dang it, why didn't I think of that?!) My friends and church family were an amazing support too! They were praying for me, taking my family meals, and visiting me. As much as I hated being in the hospital and hated the situation, it was a great reminder of just how blessed I am.
On day five I was discharged. It was my youngest sons birthday, so I was thrilled to get out of there and see my birthday boy! We met my parents and siblings and had a quick birthday party for him, then headed home! It felt great to be home sweet home!
Back to the Hospital
By the time I had my appointment with the neurologist I was experiencing a lot of pain. My legs and feet were so sensitive it hurt to just touch them. After speaking with the neurologist and going through a series of tests, he told me he had some bad news. He explained that he was pretty certain I had guillain-barré syndrome.
Guillain-WHAT?!
If you have never heard of it, you are not alone. It is rare, afflicting only one in 100,000 people. So, basically I am really special! Ha ha! Because I can barely pronounce it or spell it, from now on I will refer to it as GBS.
GBS is a rapid-onset muscle weakness caused by the immune system damaging the peripheral nervous system. The symptoms of Guillain-Barre syndrome typically begin with tingling and weakness in the feet and legs that gradually moves up to the rest of the body. It is described as a "symmetrical ascending radiculopathy," meaning that often weakness starts in both legs and then slowly moves up the body with both arms being affected too. The weakness gradually worsens and turns into paralysis. (Medical News Today)
Ok, that's enough of the medical terms. In my case, everything from the waist down, my lips, and my fingertips were affected.
The doctor had more bad news for me....I was to go check-in at the hospital and would need to stay a minimum of five days. Immunoglobulin therapy is used to treat GBS: I was given immunoglobulins (also known as antibodies) from donors. This treatment blocks the harmful antibodies involved in the autoimmune response.
Chris and I went and grabbed a late lunch then headed to the hospital to check in to my room. We arrived at the hospital around 4:30 pm and I was not completely checked in and in a bed until around 7:00 pm. I was really hurting at this point. I heard a nurse in the hall tell the other nurse: "we need to get her something for relief, she is literally shaking and she says she is hot."
Chris headed home to pick up our boys, I got an IV, started my first round of immunoglobulins, some pain medication, and laid back and waited for my sister in law to get there. She spent the night with me that night. I slept a total of one hour. I couldn't get comfortable, but my sister in law was a trooper and stayed up most of the night with me. We giggled and acted like a couple junior high girls, it was a wonderful distraction from what was going on!
One night down...four more to go!
Guillain-WHAT?!
If you have never heard of it, you are not alone. It is rare, afflicting only one in 100,000 people. So, basically I am really special! Ha ha! Because I can barely pronounce it or spell it, from now on I will refer to it as GBS.
GBS is a rapid-onset muscle weakness caused by the immune system damaging the peripheral nervous system. The symptoms of Guillain-Barre syndrome typically begin with tingling and weakness in the feet and legs that gradually moves up to the rest of the body. It is described as a "symmetrical ascending radiculopathy," meaning that often weakness starts in both legs and then slowly moves up the body with both arms being affected too. The weakness gradually worsens and turns into paralysis. (Medical News Today)
Ok, that's enough of the medical terms. In my case, everything from the waist down, my lips, and my fingertips were affected.
The doctor had more bad news for me....I was to go check-in at the hospital and would need to stay a minimum of five days. Immunoglobulin therapy is used to treat GBS: I was given immunoglobulins (also known as antibodies) from donors. This treatment blocks the harmful antibodies involved in the autoimmune response.
Chris and I went and grabbed a late lunch then headed to the hospital to check in to my room. We arrived at the hospital around 4:30 pm and I was not completely checked in and in a bed until around 7:00 pm. I was really hurting at this point. I heard a nurse in the hall tell the other nurse: "we need to get her something for relief, she is literally shaking and she says she is hot."
Chris headed home to pick up our boys, I got an IV, started my first round of immunoglobulins, some pain medication, and laid back and waited for my sister in law to get there. She spent the night with me that night. I slept a total of one hour. I couldn't get comfortable, but my sister in law was a trooper and stayed up most of the night with me. We giggled and acted like a couple junior high girls, it was a wonderful distraction from what was going on!
One night down...four more to go!
Sunday, June 26, 2016
Birthday to Hospital
I turned 32 at the end of April. The day after my birthday I didn't feel well. It wasn't anything unusual, just felt sick to my stomach and very tired. About a week after that I started feeling sick every time I ate. I didn't have an appetite, but made myself eat at least once a day because my stomach would be begging for food. Nothing tasted good! My husband made a really nice meal for me on Mother's Day. I couldn't eat a bite. The next day I started throwing up (sorry, no nice way to explain that one!) I just assumed I had a stomach bug, but as days went by with not being able to keep anything down, I realized there was something else going on. I eventually went to the doctor. I have had issues with my esophagus in the past and my doctor agreed that that was probably the problem. She put me on an all liquid diet while I waited to be seen by a Gastroenterologist. Evidently, GI doctors are very popular, because after a full week I still hadn't heard from them. I made several annoying phone calls, all the while struggling to even keep water down.
As you can imagine I was miserable and getting very weak. I had not had a full meal in weeks, which landed me in the Emergency room. My blood pressure was through the roof because I was unable to take my medication. I was admitted because they wanted to watch my blood pressure and give me fluids because I was severely dehydrated. I was released the next day still feeling sick, but with an appointment to see a Gastroenterologist the next week.
It was a long week of waiting and I was continuing to get worse. I started feeling tingling in my chest and pain in the middle of my upper back the day after I left the hospital. The following day my legs were kind of numb when I woke up. I had a hard time walking, but was able to get around slowly. The next day I had to hold on to the wall to walk, and the day after that I could barely walk at all. I knew things were bad when I took a load of laundry out of the dryer and my legs gave out. I fell to the floor. It hurt, and I was mad that I couldn't walk. I laid there for about 5 minutes and just cried. I think I knew then that this was bigger than an esophagus problem or stomach bug. But, I picked myself up and told myself I was crazy.
By the time my appointment with GI rolled around I had to be taken in to the office in a wheelchair. I explained what was going on and the doctor asked me if I could stand up. I told him I could stand, but I was wobbly. He didn't take my word for it and made me show him. He held on to my hands as I stood and I collapsed into him. He advised us to go straight to the ER. After a lot of blood tests and 2 MRIs I was sent home and told I was perfectly healthy according to all the tests. I left in a wheelchair, extremely frustrated and not knowing what to do next. I didn't sleep at all that night because I was unsure if I would ever get an answer or be able to walk again!
Thankfully my GI doctor called my husband the next day. He was upset that I was released without an answer, and expressed his concerns about the condition I was in. He called in a favor and got me an appointment with a neurologist the next day.
I had no idea going into the appointment what I was about to face. My husband encouraged me to pack a bag in case I ended up in the hospital. I was reluctant because I figured this appointment would be no different than the rest and I would be sent home with no answers. But, I packed a bag with one set of clothes. Little did I know that was not even close to what I would be needing!
As you can imagine I was miserable and getting very weak. I had not had a full meal in weeks, which landed me in the Emergency room. My blood pressure was through the roof because I was unable to take my medication. I was admitted because they wanted to watch my blood pressure and give me fluids because I was severely dehydrated. I was released the next day still feeling sick, but with an appointment to see a Gastroenterologist the next week.
It was a long week of waiting and I was continuing to get worse. I started feeling tingling in my chest and pain in the middle of my upper back the day after I left the hospital. The following day my legs were kind of numb when I woke up. I had a hard time walking, but was able to get around slowly. The next day I had to hold on to the wall to walk, and the day after that I could barely walk at all. I knew things were bad when I took a load of laundry out of the dryer and my legs gave out. I fell to the floor. It hurt, and I was mad that I couldn't walk. I laid there for about 5 minutes and just cried. I think I knew then that this was bigger than an esophagus problem or stomach bug. But, I picked myself up and told myself I was crazy.
By the time my appointment with GI rolled around I had to be taken in to the office in a wheelchair. I explained what was going on and the doctor asked me if I could stand up. I told him I could stand, but I was wobbly. He didn't take my word for it and made me show him. He held on to my hands as I stood and I collapsed into him. He advised us to go straight to the ER. After a lot of blood tests and 2 MRIs I was sent home and told I was perfectly healthy according to all the tests. I left in a wheelchair, extremely frustrated and not knowing what to do next. I didn't sleep at all that night because I was unsure if I would ever get an answer or be able to walk again!
Thankfully my GI doctor called my husband the next day. He was upset that I was released without an answer, and expressed his concerns about the condition I was in. He called in a favor and got me an appointment with a neurologist the next day.
I had no idea going into the appointment what I was about to face. My husband encouraged me to pack a bag in case I ended up in the hospital. I was reluctant because I figured this appointment would be no different than the rest and I would be sent home with no answers. But, I packed a bag with one set of clothes. Little did I know that was not even close to what I would be needing!
Welcome
I'm not sure how to start this. I have went back and forth on how I wanted to record this unexpected journey I am currently on. I had a friend suggest I write down what I was experiencing each day so I could look back and see how I got from point A to point B. I agreed, and I knew it would be a good outlet for me. I love to write, but I write like I talk...not paying attention to grammar or punctuation. I know of at least 3 of my former teachers that will be reading this, so I'll apologize now for "not following the rules!"
So, I decided to go for it and start this blog after the 5th or 6th person encouraged me to do so. A card from a family member explaining that they checked Facebook each day for updates sealed the deal. This blog will be a way for me to update anyone who wants to be updated on my progress, but to be honest, this blog is more for me. This is a way I can record the day by day progress, and it will be cheap therapy for me! ;)
That being said, welcome!
-Ashley
So, I decided to go for it and start this blog after the 5th or 6th person encouraged me to do so. A card from a family member explaining that they checked Facebook each day for updates sealed the deal. This blog will be a way for me to update anyone who wants to be updated on my progress, but to be honest, this blog is more for me. This is a way I can record the day by day progress, and it will be cheap therapy for me! ;)
That being said, welcome!
-Ashley
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