Thursday, February 4, 2010

Cycling symptoms

I have had several people ask me what kind of symtpoms I have been having, so I thought I would let you know what "a day in the life "might look like for me lately....although I have to admit, it can change anytime:)

Yesterday I dropped Sydney off to get her hair done when I walked in to pick her up, the smells of the hair salon were so overwhelming. My symptoms instantly seemed to maximize. I felt like my head was put back into the vice grip from ear to ear along the backside. My neck was so stiff I could barely turn my head. My muscles began to twitch and then went into their crippling twisting, especially throughout my hips. My arms began to burn and my face went numb. By the time I got out I could barely think. I was overly sensitive to lights and the noise around me. I am overly sensitive to chemicals, even if i am just smelling them, and any kind of meds. I haven't had as much of a problem with them in awhile, after coming off of treatment, it seems like I am hit by a mac truck when I encounter them.
I had a hard time keeping my head up, usually after that happens, it's like a weight is put on the back of my neck and I can't pick it up. My all over pain intensified for the rest of the evening. by the time i went to bed i was having difficulty a belt was wrapped too tightly around my rib cage. I began to have the "inside" shakes...that's when I feel like I look like Catherine Hepburn, but I'm not really exhibiting it physically. (All during that scenario, I was trying to cook dinner and have some time drawing with my kids.) Sometimes in a couple of hours those symptoms might change to something else or even relax somewhat, but after the chemical exposure, it usually intensifies for days to a week and then begins to subside. So last night I had a hard time making it up the stairs. I sat on my knees for about a half hour to try to disperse some of the hip pain. That seemed to help, otherwise, getting into bed is tough. After lying down, the pain shifts around, so that usually lasts for a good couple of hours. Last night I went into intense pain in my hips and back that made my heart rate go up and start racing and skipping beats again. I had difficulty breathing throughout the night. It might start out as the belt buckle scenario and then just turn into being very difficul to get a deep breath, like your rib cage has no expansion capabilities. I had a lot of stomach discomfort also throughout the night. I wish I could say that I tossed and turned, but I am not capable of doing that. I can only lie on one side with my knees bent half way up. If I am lucky, I will be able to straighten them out while still lying on that side in the middle of the night and then bend then back up. On my best nights, i can turn over..very slowly and intentionally. by that I mean I have to physcially manhandle my hips with my hands and pick them up to move them and try to flip myself over to the other side. I usually can only last 15 or twenty min. or so, because it cause my heart to do some funny things. I am so thankful that Trent is a great sleeper! He sleeps through it all! so last night was a onesider no movement kind of night. About 3:00am I woke up with night sweats and my body physically shaking. That lasted about an hour and half. Sometimes I use that time to pray or listen to podcasts. By the time the shaking stops, I have insomnia, so .....I keep on praying or listening to podcasts. If they are really good, I usually end up falling asleep!;) I think I fell asleep at 5:30. Woke up at 7:00 feeling like I was going to throw up from being so dizzy. The room would not stop spinning, and I had only opened my eyes to look at the clock once. My neck went into "paralyze"mode...I feel like I am locked up and can't move, even if I try. Trent let me sleep in and he took the kids to school. (He is so great!..I am so thankful for His support and encouragment!) By 9:00 I was able to get up. My heels were in total pain, very stiff hard to walk, as well as my hip muscles. I ended up kneeling down and asking God to give me enough strength and abiltity to get in the shower and get downstairs,....(I had a meeting scheduled at 2 :) to please keep me close to Him and not give in to discouragement today. As always,....He has seen me through. I made it downstairs, (having had a shower!..yea!)and was able to clean up some rooms and get some paperwork finished for epic brain has had a hard time functioning today. Very foggy...I observe, but cannot process very well. Names and ideas are hard to come by. Headache is very dull feeling and I feel exhausted and run down. Eyes can't focus too well. Harder time getting around today. Chest feels very tight and heavy. Neck continues to remain very stiff and painful.
Was able to pick up Koty from thankful for the moments I get to do that and I love to hear him say..."Mom, I love to hold your hand!" As he walks with me to the car. Those are the moments that keep me going!
I have leftovers from last night....always a good thing! ;) If I can think through all that goes into packing, etc for me and Trent to go to North Carlina and then the kids schedules here to leave for mom, I will be good. It will usually is just at a much slower pace. So here you go...that about sums it up.
Thinking about this today...Jesus said in John 15:9..."Remain in my love"....remaining is a choice...I can choose to leave (reject or not believe) God's love or choose to remain in (to trust or believe in) God's love for me and submit my will to His. .... so today...even though I might not "feel" like remaining there....I am choosing to .....and I know He will meet me there.


  1. I love you Tam. Still praying.

  2. Hi Tammy,

    (This is through my husbands account, Kevin)

    I was refered to your blog by a friend and just want to leave a little bit of encouragement here for you...

    I was ill for nearly two years, undiagnosed and sick and tired of Dr.s. (especially neurologist) Bedridden for most of that time, God blessed me with His grace to lay in bed and be okay with it. (if you knew me you would know that is NOT my character)

    My husband was my greatest advocate, in that even when I had given up on the medical profession, he found a way to get me in to the Mayo Clinic for one last try at a diagnosis. We were blessed to see a Neurologist who had seen what I had before (one of my husbands specific prayer requests) and knew of a treatment that was 75% successful.

    I know you are hearing a million stories of friends, relatives or people who tried "X" and was cured or given you their diagnosis, I REALLY don't want to do that, I just want you to know, there is always hope for you as long as you are a child of the King. Sometimes it is a cure, sometimes it isn't. But He will give you His grace when yours isn't enough.

    Just know there is one more 'sister' out there praying for you who has a glimmer of what you are going through. And if you need an ear (I promise not to give advice) to vent or pray with, I'll be happy to enlist!

    May God be glorified in you and your family through this struggle.
    Pat Mayer
    see our blog about our time in Mayo
    or my site
    both are discriptions of my life.
    In His love!