Very concerned…..

Dear Jessica,
I am sorry for your demise, however, getting to the Dr. or ER sooner will not stop the demise, my own oppinion from personal experience. Take it with a grain of salt. If it is CIDP, or reoccurrance, or relapse of GBS, it will get a lot worse. So maybe you should go to the ER. You are in my heart & in my prayers.

I would wait the few days unless you begin to experience increased numbness, diminishing strength in your limbs, or possibly difficulty breathing. I know you had a mild case of GBS, but the symptoms you describe can very well be residuals to the GBS. Often people can take 1-3 years before symptoms of GBS truly bgin to disappear. For the cramping take a tsp. of regular mustard, trust me it actually works: immediately. I can’t help you with the fatigue, all of us seem to be left with that as a residual.

Jessicah,

If you start feeling it on your face or if you have difficulty breathing or swallowing, don’t wait go to the ER. Otherwise, keep calling that nurse. Unfortunately you have to be your own advocate and keep pestering until you get what you want/need.

Praying for you.

Gary

Sorry I didn’t get back to you thru email sooner….things are still crazy around here.

If I remember correctly, I went thru a phase or two where it seemed I was worse, or new things popped up I hadn’t experienced before. It is scary even now…almost 4 years later. I was stubborn in spite of my fear and would wait things out. If it wasn’t worse later, I figured it would be better in the morning. Usually it was, even a small amount.

With your case, you have not had a chance to rest. You have continued to go go go since you first noticed symptoms. Your body could very easily rebel and send you to bed on purpose. If there is any way at all that you can take time off, have someone help with the kids, do it. I thought the whole rest thing was an overstatement when the group first told me about it, but my body insisted and I decided to take their advice. I never got treatment as you know, was considered a “mild” (is there such a thing??) case, and am still struggling with residuals today. I have a picture of a jar of energy in my mind and have a mental list of what i have to do each day. I divide that jar into sections and apply them to what I have to accomplish. If I ‘feel extra good’ and think Bah I can do more today! I find out tomorrow or even that evening I was wrong. If I have something i really want to do and know it will require more of my jar, I save up and take it easy until the event comes that I want/have to do. Does this make sense? You can only push yourself so far. You have been injured. Think of it as running a marathon (your busy wonderful life), suddenly breaking a leg, and putting a couple of bandaids on it, and continuing to run that marathon. You are going to hurt, you are going to notice new symptoms, you are going to cause more problems. I know from our talks what you have sought out and I surely wish someone would have a definite answer for you because that would take a lot of worry from your shoulders. But, seriously, rest my friend. Or your body will force it on you and you may not like what it does to get you to lay down.

I send you tons of hugs and prayers. I will email you soon!

All the things you do, you are superwoman. You have my utmost respect & admiration. I know it’s not easy. Do you take vitamin B-12 shots or sublingual. If you don’t, seriously consider it, up to 5,000 sublingual. You can get it otc.

You are in my heart & in my prayers, smitty

Jessica –

Oh how I hope you rested this weekend. I have not posted for several days because all I could do was sleep and cry – no reason for either, just that I am sick, sick, sick of being sick! You know, I had 2 major spinal surgeries prior to my GB, so I have been down since last May – and doggone it, I would just love to clean my house. But all I can do is sort of keep up with the laundry, fix very simple meals (my hubby has never eaten so many casseroles in his life) and try to look normal to the rest of the world.

I have to go back to work this August when school starts – my short term disability has run out and we can’t afford any more time off. But my school is gang ridden (3 stabbings last year and a couple of guns on campus) and I am not sure if I can get it together to deal with those tough, tough boy-men for another year. It has me quite down. So, I am interviewing at the middle school level, and am trying to look perky and together. It is hard, as you know. I guess I should be glad for the job I have, but really, after what we’ve been through I am not sure I will deal well with all the teen age drama that comes with high school girls.

Thanks for letting me vent – I was planning on writing you a quick, supportive note as we are really very close on our recovery road and I feel a special tie here. You reflect so much of what I feel. So, for both of us – let’s take a deep slow breath, have a long tall glass of ice tea (or a cup of hot if our feet are unbearably cold) and take some time out for us. You are in my prayers. Take care .

Oh you are very brave, school wise, my heart & prayers go out to you.
Love & gentle hugs, smitty

I think I know how it is when people say “you are better right?” Or “Are you well now”? To those people “anyone who does not have an autoimmune disease themselves or their family, I say “Yes I’m wonderful”! Which means “I do not want to talk about it”. These are the people who knew me before CIDP, when I worked etc, who saw me walk with a cane then get braces, then walk with walker & more braces, now even more braces & in a wheelchair & can’t walk anymore. Yes some people still ask me if I’m “well’ or “better”. Y’all know how it is to try to explain it to anyone who doesn’t have it. Praise the Lord & thank you ,my GBS/CIDP family who listen to me venting & I know you care. I love all of you. You are all in my prayers.
Love, smitty

Smitty =
Your gentle thoughts and words means so much to me – I can’t tell you how I appreciate them. My sister has lupis and hates it when people say “Oh, you must be well now” when it is one of those days when she isn’t swelled up and crippled with the side effects. People tend to understand hidden disease like heart, diabetes, and cancer – but we have had such media attention there I guess they feel like they can talk to the issues. Auto immune diseases are a mystery to us all, and when we walk like we are walking on marbles, when we bring the walker to church, or break out the cane on a bad day folks just don’t get it – “Oh, I thought you were better! or cured, or well.” Ups and downs are hard for us to accept, so I guess I should expect others to have a harder time. So, your “I’m just fine, thank you!” is the best idea.

BTW – I had a good junior high interview today – please pray that one will hit to get me out of my dangerous high school. I know someone has to teach gang members who don’t want to be taught, but please, I don’t want that for me right now. 🙂

Take care – and prayers for all of us who struggle, and for those who offer support.

Thanks Cathie, You are in my prayers & I pray that you get that junior high place. God Bless you. Love & gentle hugs, smitty