I'm still plugging away with therapy. Right now, I'm doing some stretches, then I work on my feet, balance, and strengthening on several different machines. I can handle about 3 minutes on each machine before my feet start feeling like they are on fire! But, I'm making progress, building muscles, and learning to walk better. I have walked with a cane the past two sessions. It's a slow walk, but my posture is good and I haven't wobbled or fell yet!
I'm amazed at how much my littlest one, who was a major momma's boy, seems to have completely forgot I exist! He won't sit on my lap because he is afraid he will hurt me. He doesn't ask me to help him with anything anymore, he goes straight to dad! He has made several comments about how he wants me to get better soon so I can do fun stuff with him! Several weeks ago he randomly shouted "Jesus, please make my mom's legs better!"
I continue to have good days and bad days, both physically and emotionally. I have a strong support system that get me through the days when I get down and frustrated about my current situation. I'm hoping that the physical pain will be gone soon. It seems to be different for everyone. I'm thankful that I have most of my feeling back in my legs, but ready for the pain in my feet to be gone!
I think I am done with the wheelchair, which is awesome! I have used my walker when we go anywhere, which right now is basically just church and therapy. I get tired a lot faster, but it feels good to be a little more independent.
We start enrollment for the boys next week! I was sure hoping to be walking independently by the time enrollment rolled around. It doesn't look like that will be the case, but I will just have to set a new goal!
As always, thank you to my prayer warriors and encouragers! I'm blessed to know so many people who check in on me and are constantly reminding me that they are praying for me.
Saturday, July 30, 2016
Monday, July 18, 2016
One month
Here we are, one month into this whole GBS thing.
I've had two therapy sessions and will continue to go twice each week. They are unsure how long I will have to go, like everything else with this syndrome it is different for each person. My legs are starting to look like a 9 year old girl. The therapist said my legs and feet were extremely stiff but they were impressed with my skills on the walker! ;) I've had quite a bit of practice maneuvering through the house.
Good news: I haven't been to the ER since my last post!
I went to a new general practitioner to work out my pain managment and blood pressure meds. So far, with new meds I have been able to keep my blood pressure at a safe level. This is a major answer to prayer because it was getting dangerously high. I've seen so many different nurses and doctors the past month. Of course, the first thing they do is take your vitals. I always warn them that I typically have high blood pressure. I usually just get a quick "ok"....then they take it and start freaking out and taking it in different ways trying to get a lower reading. But, the week before last it was beyond high, when I saw a reading that was higher than what I had when they sent me in for an emergency C-section with Oliver....I knew I was in trouble! Luckily, the ER can usually get it down within an hour or two. But, it's even better to just keep it down with medication at home. I can't afford to go to the ER 2-3 times a week! So far, so good! I shouldn't have to stay on the extra meds after this is all over. This is just an extra "ooooph" while I'm dealing with the nerve pain, stress, therapy, and all the other fun stuff GBS brings!
We have had a meal prepared for us every other night from someone in our church since I was in the hospital. It has been so nice! We continue to receive encouraging words, cards, boxes of goodies, and people offering any other help we need. We appreciate it so much!
August will be here soon, you know what that means?! Back to school! I'm extremely nervous that I won't be walking/driving/half normal by the time the boys return to school. I want/need to be able to help with drop-off/pick-up. My own schooling is still up in the air. I'm just playing the waiting game to see how far I progress by the time it gets close. Time will tell!
Expecting a great week of therapy and progress!
I've had two therapy sessions and will continue to go twice each week. They are unsure how long I will have to go, like everything else with this syndrome it is different for each person. My legs are starting to look like a 9 year old girl. The therapist said my legs and feet were extremely stiff but they were impressed with my skills on the walker! ;) I've had quite a bit of practice maneuvering through the house.
Good news: I haven't been to the ER since my last post!
I went to a new general practitioner to work out my pain managment and blood pressure meds. So far, with new meds I have been able to keep my blood pressure at a safe level. This is a major answer to prayer because it was getting dangerously high. I've seen so many different nurses and doctors the past month. Of course, the first thing they do is take your vitals. I always warn them that I typically have high blood pressure. I usually just get a quick "ok"....then they take it and start freaking out and taking it in different ways trying to get a lower reading. But, the week before last it was beyond high, when I saw a reading that was higher than what I had when they sent me in for an emergency C-section with Oliver....I knew I was in trouble! Luckily, the ER can usually get it down within an hour or two. But, it's even better to just keep it down with medication at home. I can't afford to go to the ER 2-3 times a week! So far, so good! I shouldn't have to stay on the extra meds after this is all over. This is just an extra "ooooph" while I'm dealing with the nerve pain, stress, therapy, and all the other fun stuff GBS brings!
We have had a meal prepared for us every other night from someone in our church since I was in the hospital. It has been so nice! We continue to receive encouraging words, cards, boxes of goodies, and people offering any other help we need. We appreciate it so much!
August will be here soon, you know what that means?! Back to school! I'm extremely nervous that I won't be walking/driving/half normal by the time the boys return to school. I want/need to be able to help with drop-off/pick-up. My own schooling is still up in the air. I'm just playing the waiting game to see how far I progress by the time it gets close. Time will tell!
Expecting a great week of therapy and progress!
Wednesday, July 6, 2016
We Don't Say That Word
I haven't been updating as often as I thought I would. I love to sit down at night and just type. It's good for me. But, the past two to three nights my finger tips have been so sore with nerve pain it just wasn't worth it. They are better tonight...so I'm taking advantage.
I've been giving updates via Facebook so my friends and family can check in easily. It's an easy way for me to share once, and anyone that wants to know can read. I didn't realize how valuable it was until I quit updating for a short time and my inbox was flooded with "are you ok?" "how are you?" "what's going on?"....isn't technology great? I put up a status update today that I was back in ER...no fancy details to tell, just needed fluids, extra blood pressure meds, and pain relief. I didn't have "the happy" in me for a thumbs up pic at this point...after the meds were in me I felt a lot better though ;)
(side note: either my arms are getting skinnier or I've been in major denial about having "man hands" all my life!")
My Facebook updates are the basic in's and out's of hospital visits, tests, diagnosis, blah, blah, blah....
But today, while I was showering/bathing (yeah, when you can't stand very long, and you can't get out of a bathtub, you get to do this weird cross of sitting on an old person chair and spraying yourself...something for my young friends to look forward to!) Anyway, it's a painful part of my day. Heat hurts, cold hurts, it's tough to use some of the muscles I don't get to use very often now. I was sitting there, amping myself up for the next move...and I thought, this is the part that truly sucks. Sorry, if you don't like that word. I have a little friend that would tell me "We don't say that word!" But, I got to thinking about how so many people are faced with sooo much worse than what I am. So many people are, day in and day out, dealing with disease and sickness that is taking away what we take for granted every day! It changes how you feel, how people look at you, your body, your way of thinking...I am faced with a temporary syndrome, yes, I get scared that it's not temporary. I think that is just human. But, in the midst of the things that "suck"....I'm not naive to the fact that I am lucky it is not so much worse.
With that being said...I still get mad. I still feel sorry for myself sometimes. I hate so much about this. It's the things that happen in the middle of the day, that should be easy, when no one is watching, that just SUCK.
Now, if I still have all my readers that hate that word, I will continue....
We are in what feels like a constant phone battle with specialists.
So and so referred you here, call this number, but this number never got any paper work, call so and so back, then you get the awful leave a message and someone will get back to you in 24 hours.
It seriously feels like a full time job. I have had many people ask how they could specifically pray for us right now. This is how! Pray we get the right people to answer our calls and that we can get a move on the rest of the tests that need to be done. Pray that if the current doctors are not the right doctors for my situation, God will show us who to call.
As soon as I can get some of the nerve pain under control I will start physical therapy. I am so ready! I am more aware now of how hard it is going to be. It's going to take some blood, sweat, and tears...but I am determined to do what it takes. My littlest one asked today on the way to the hospital: "Dad, is mom always going to be like this with her legs?" Before either of us could answer, my oldest replied "Man, I hope not!" They are ready for mom to be back, and I'm ready to be back!
Let's Do This!
I've been giving updates via Facebook so my friends and family can check in easily. It's an easy way for me to share once, and anyone that wants to know can read. I didn't realize how valuable it was until I quit updating for a short time and my inbox was flooded with "are you ok?" "how are you?" "what's going on?"....isn't technology great? I put up a status update today that I was back in ER...no fancy details to tell, just needed fluids, extra blood pressure meds, and pain relief. I didn't have "the happy" in me for a thumbs up pic at this point...after the meds were in me I felt a lot better though ;)
(side note: either my arms are getting skinnier or I've been in major denial about having "man hands" all my life!")
My Facebook updates are the basic in's and out's of hospital visits, tests, diagnosis, blah, blah, blah....
But today, while I was showering/bathing (yeah, when you can't stand very long, and you can't get out of a bathtub, you get to do this weird cross of sitting on an old person chair and spraying yourself...something for my young friends to look forward to!) Anyway, it's a painful part of my day. Heat hurts, cold hurts, it's tough to use some of the muscles I don't get to use very often now. I was sitting there, amping myself up for the next move...and I thought, this is the part that truly sucks. Sorry, if you don't like that word. I have a little friend that would tell me "We don't say that word!" But, I got to thinking about how so many people are faced with sooo much worse than what I am. So many people are, day in and day out, dealing with disease and sickness that is taking away what we take for granted every day! It changes how you feel, how people look at you, your body, your way of thinking...I am faced with a temporary syndrome, yes, I get scared that it's not temporary. I think that is just human. But, in the midst of the things that "suck"....I'm not naive to the fact that I am lucky it is not so much worse.
With that being said...I still get mad. I still feel sorry for myself sometimes. I hate so much about this. It's the things that happen in the middle of the day, that should be easy, when no one is watching, that just SUCK.
Now, if I still have all my readers that hate that word, I will continue....
We are in what feels like a constant phone battle with specialists.
So and so referred you here, call this number, but this number never got any paper work, call so and so back, then you get the awful leave a message and someone will get back to you in 24 hours.
It seriously feels like a full time job. I have had many people ask how they could specifically pray for us right now. This is how! Pray we get the right people to answer our calls and that we can get a move on the rest of the tests that need to be done. Pray that if the current doctors are not the right doctors for my situation, God will show us who to call.
As soon as I can get some of the nerve pain under control I will start physical therapy. I am so ready! I am more aware now of how hard it is going to be. It's going to take some blood, sweat, and tears...but I am determined to do what it takes. My littlest one asked today on the way to the hospital: "Dad, is mom always going to be like this with her legs?" Before either of us could answer, my oldest replied "Man, I hope not!" They are ready for mom to be back, and I'm ready to be back!
Let's Do This!
Friday, July 1, 2016
One Step Forward Two Steps Back
Days 7 and 8 were a little rough. I said I would share "the good, the bad, and the ugly"....
Here is some UGLY:
I woke up in the middle of the night on Tue/Wed sick with stomach issues. I'm still not sure if it was some kind of bug or if it was just part of this whole immune system attacking itself thing. I spent all day Wednesday in misery. It was just one of those "no matter what you do you can't get comfortable" type sicknesses. By Wednesday evening I couldn't move my legs again, my toes felt like they were going to fall off, and I was extremely weak.
Thursday morning rolled around and I felt fine stomach wise, but I was in a lot of pain. I was back to how I felt over a week ago as far as strength and numbness. To say I was frustrated is an understatement. I got a surprise visit from my mom late morning. FYI, if you surprise visit me, expect to stand at the door for a minimum of 5 minutes...it takes me awhile to get to the door! ;) Within 10 minutes of being here she told me she was taking me to the ER. I had debated calling my husband earlier in the morning to suggest the same thing. I knew I needed to do something. My neurologist was on vacation and I had tried calling his office numerous times with no answers. I was told he would be back Friday but probably couldn't see me until Monday. I knew I couldn't wait that long.
Luckily, the ER got me right in, I never sat in a waiting room. The ER doctor was able to get ahold of my neurologist and he gave instructions on what to do. It was good to at least have him on the phone so I knew I was still dealing with the doctor who knew my condition in the hospital. It was also encouraging that he insisted I call with any changes. He said this was complex and he wanted to know all the details and what I'm experiencing so he knows how to treat me. Hopefully, we will be done with the unhelpful phone calls to receptionists and nurses who have no idea who I am or what I have.
I was given steroids through IV and pain medication. The nurse said as soon as the steroids were done we could go home. My neurologist ordered two more days of Immunoglobin therapy, that is the same treatment I received in hospital. About half way through the steroids my vitals were getting worse. My heart rate and blood pressure just kept rising. I was given more pain meds and finally some blood pressure meds in my IV. That brought it down low enough to come home.
It was a long day. Thank you to my mom and sister for sitting with me all day! I was cranky and irritable so I know it wasn't fun for anyone. My husband "gently reminded" me after I got home that my "cranky level" had been pretty high the past few days. I had a lot of excuses in my back pocket, but realized he was right. I know the people that love me understand why I have been reacting this way the past few days, but it doesn't make it ok. I had to do an attitude check. I promised to stay positive through all this, and I haven't been the past few days. Everyone, including me, is happier when I have a positive attitude! :)
Day 8 is here! I am writing this at 7:30 am and haven't been to sleep yet. I think I can blame the steroids. I am supposed to go in for my first immunoglobin therapy today and they take 4-5 hours, so maybe I will catch a good nap!
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