Thursday, October 14, 2010

Two Months of Bad Days

Here is the health update that I have been working on writing for several weeks now. Other mentioning bad days in this post I haven’t said much about the crash I had two months ago and from which I am still recovering. It’s hard to know how to explain such a complicated medical mess, and I have been too brain fogged on many days to explain anything anyway. Have you noticed that most of my posts lately have either been guest posts, picture posts, simple posts, or posts with which I received help? There’s a reason for that! My brain was only capable of so much. But today I’ll let you know a little of what has been going on behind the scenes as I blog from bed.

Back in August my health suddenly took a turn for the worse. The weakness, fatigue, and brain fog grew increasingly worse, so we worked in extra rest-time for me so that I could recover. However, things continued to get worse despite the rest. I suffered from periods of confusion and was no longer physically able to care for William and Adelaide even a little bit. The weakness and fatigue landed me in bed 20-23 hours a day. I was tired, and by tired I mean absolutely wiped out. At times I was on the verge of fainting even while lying in bed. My body felt like it was barely working. Just lying in bed was exhausting. Even when I wasn’t stuck in bed because of weakness, I often had to be isolated because of sensory overload. Sights and sounds were painful and overwhelming to my nervous system.

My mom came up to help on a moment’s notice, and boy did she work hard while she was here! Friends and neighbors have stepped in and helped out a lot. They have spent many hours watching William and Adelaide for us while Will was in class and I was confined to bed, and they continue to help us out a lot.

In recent weeks I have been to see two of my doctors, and I have spent a lot of time on the phone with my nurses at various doctors’ offices. We have been trying to figure out what is going on and what can be done for treatment that hasn’t already failed in the past.

The problems I was having with mental confusion, muscle weakness, and fatigue appear to be only dysautonomia related, which is good. The increase in severity of symptoms appears to come from a lack of proper blood flow to my brain. Whenever I am sitting or standing, my brain does not get adequate blood flow, and it has been this way for years. Then when I lie down the perfusion of blood in my brain is better. For a couple of weeks, however, my brain wasn't getting adequate blood flow even while I was lying down. The lack of adequate blood flow and oxygen for such an extended period of time really wiped me out.

It is also possible that I have been suffering from a lot of severe silent migraines (aka, migraine aura without headache). I do have a lot of headaches, occasional migraines, and problems with sensory overload, but we aren’t sure how many of my symptoms in the past two months have been due to migraines and how many have been due to everything else dysautonomia related. I will be seeing a neurologist soon to try to get some of this sorted out.

Recovering from this recent crash has been very slow and hard. Each day I keep fighting my body to wake up, to sit, to eat, to spend time with my family. It doesn’t want to cooperate. My muscles are sometimes weak to the point of giving out, even after resting. I did not expect to still be so weak and tired two months after my original crash. My body isn’t bouncing back well, even with all of the extra help and the slow pace of life that we’ve had lately. There are improvements; they are just very slow in coming, and I am having a lot of bad days still. Right now the goal is to get my autonomic nervous system stable again, and to steadily gain back some of what I have lost.

In an effort to help control symptoms and help my body recover from this crash, my doctor has raised my midodrine dosage and started me on in-home IV saline infusions. We avoided the IVs for as long as possible, but it became clear that they are necessary right now. I tried to maintain a good fluid level by drinking a lot of water and eating a lot of salt, but because of Gastroparesis my tummy just couldn’t do it. We will be doing IV infusions three times a week for the next two months. Hopefully that will be enough to get my health stable again, and hopefully I will then be able to stop regular IVs. I am also trying a migraine medicine that helps some with the headaches and sensory overload. Ahh… relief from sensory overload is a wonderful thing.

I still need to spend a lot of time in bed each day. I am thinking more clearly now, though, so I am at least able to keep busy with reading, blogging, or watching television even if I have to be in bed. I am trying to find the right balance between rest and activity. I need a lot of rest, but I also need to push my body a little bit in order to regain some of what I have lost. I don’t know how much I will be able to regain, but I am working hard to do what I can to improve my current level of functioning.

That is the medical side of life at the moment. It is complicated and confusing and hard. There are no easy answers or simple fixes. We are still waiting to see what improvements are to come, and we are working to figure out how to function day to day if those improvements don’t come. Meanwhile, we continue to rely in the Lord during these difficult days. In Him we find the grace and strength we need for each moment.

“But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong” (2 Corinthians 12: 9-10, NIV).


  1. Hi Rachel, I'm sorry you're having such a hard time. I really emphasize with you and know how frustrating it is when there really aren't any answers. I have been reading this article from hospital soup written by a woman who's wrote about some things that helped her recover. There are some things I don't believe I have had checked, such as ferratin- never heard of it! Or autoimmune thyroid antibodies- who knew your immune system can attack your thyroid. I am going to have them tested and will email the article link & list of things you may want to have tested to see if they can improve your quality of life. Hugs & prayers

  2. Rachel- I am sorry to hear that you are having increased difficulty and continue to pray for you and your family. I hope that your consultations with your doctors will provide answers to help you gain strength and improve your function. Your grace is an inspiration.

    I pray for your mom, too. Ruth is one of the strongest and most steadfastly faithful women I have ever known. What a blessing she is. :)

  3. It saddens me to know you have been having a really rough time. However, I am encouraged and inspired by your faith as you persevere through these many trials! Many prayers are being prayed for you now!

  4. sorry youve been having a bad time of it lately. im really hoping things will improve soon. x

  5. hey I am a fellow dys christian, as I was reading your blog, I thought God how could I make it through with out so many dys christians that know my battles, that live in the same body that are wacky... it dawned on me I can't imagine suffering this with out the www of the christian dys family that is out there. I too have just had a crappy month..October hits and for the last 7 years I my body crashes... It is hard because we never want to go the next step... like doing the iv drip etc... even though these things mostlikely will help... too bad we cannot stand out side of time and see the journey.... Yes sometimes letting go and relying on others to help is real hard... most dys people are real active energetic people behind the disorder.. anybe even over achievers... Dys is all about learning to live all over again... with Gods strenght... yeah bad says prove it that you can't do it on your own.. I had some stouble breathing the for the last 3 weeks on and off... one day was real bad.. had my feet up on the couch, laying on the carpet and I just had to focus on just one breath at a time.. that is what I was left with... of course to others I look relaxed... inside I am battling... yeah so I fired off and email for prayer.. Dys changes your intimate relationship with God .. before this momster, I thought I knew My relationship with God was not great... ha I prayed for a long time for God to change my now I am in constant chat mode with him... and now I find that I am listening to him much more that talking, barganing,,, he is actually becoming a shepperd and a refuge in all my weknesses... when I feel overwhelmed I seek his encouragement... cause with the brain fog and the weakness in the morning I can't focus on scripture.... so I bad days somehow in God's hands become good days.. yeah he hasn't done the snap cure that I pray for but inside he hasn't left me without help and he can do what no person in hte flesh can do... he is touching more through your own journey than you'll ever know.. so my payers for your are for endurance to stick it through with God and all the people he is sending your way, strength to abide in his love for you, ears that can hear his voice and a heart that will accept his love and deep healing divinity for your body and your mind and soul and courage for when you feel you can't take another minute of the pain of dys
    thanks for sharing your faith hope and love with us dys folks.. it blesses me more than you know


  6. Oh wow you've got a lot going on. I can't even imagine how frustrating that can be - I can only hope that you are starting to recover some and that the interventions are working. Fingers crossed and prayers are coming your way.


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