Deep dark secrets......

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Deep dark secrets......

Postby Amy Joe » Sun Apr 06, 2008 4:41 am

I don,t even know where to begin. Another bad night sleeping. :( :(

For about 4 weeks now my entire back from my tail bone to the top of my head has been hurting, like I can't get comfy. I feel twisted. The tops of both my hands feel very stiff and trying to open even a jar I can not do. I look in the mirror and my left side of my face looks like it is out of line, kinda droopy.

I don't want to freak out or even tell my DH.

When I go to bed for about an hour the bottom of my feet burn, not horrible but they hurt. Been having a lot of twitching in my arms when I type or write.

I have always been able to have a daily BM and now I don't. Could be 3-4 days and the ache on my right side in my lower back the day I go is bad.

I am just hoping that my DH does well at our new job and we get settled into our new house. Because I don't know how much energy I have left.

I have to keep going....... I will keep going...... There are hours in the day I feel I am going to just collapse!

I am taking every precautionary measure. No lifting, straining, bending over. I take my meds regularly, try and get rest and keep a positive thought process.

My problem is with walking. Never use to be. The more I walk the worse my spine feels. Legs lock up and I get really stiff. It feels like there is something retricting my lower back from flexing and on the right side of my neck.

Years ago when I had Lymes I was sent to a rumatolist (spelling?), he had me do this test of flexing, bending all kinda ways. With my hands, legs, neck and back. He said that I have Hypomobility. Never really gave it any thought, well you can't really think when you are suffering with Lymes. I just always thought I was very flexable! Even right now I can bend over and touch my chest to my legs.

So having times when things lock up is scary! My flexablity has been the one area that my 1st NL was very happy with. Keeping my neck and back moving.

Just kinda scared tonight, this morning! I love what I do for work, so happy to be with people I know and trust. I don't want to loose my ability to work a full time job. I guess I am just trying to realize that my body no matter how many things I stop doing, is getting worse. I will I guess just have to continue to make adjustments to my daily activities.

Thank you for allowing me to express my fears! I usually keep the dark side to myself however bottled up inside is not healthy!

Amy Joe
MVA 11/05, Dx CM 7mm 1/06, PFD 10/07/2008
Occipital Neuralgia, POT's, Hashimoto's Thyroiditis, Vitamin D Deficient, Lymes, Celiac
NS: Dr Carl B Heilman
Tufts Medical in Boston
http://www.amyjoeonetoughcookie.blogspot.com
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Postby *Hope* » Sun Apr 06, 2008 8:04 am

Oh Amy, I'm so sorry you had a such a rough night. I think the nights are the worst. Laying in the dark with your thoughts racing....it seems to be a dangerous time for me as well. It's too easy to get down.

I'm so sorry for the new pain that you're going through. :( It sounds like you should talk to your DH about it though. Holding onto the pain all by yourself is too much. You don't have to have a "freak out", but let him know what's going on. I'd be willing to bet that he can tell that something is going on anyway.

I'm not sure if you've looked into it, but you might want to check out a stool softener to make the BMs easier and hopefully more frequent. Not being able to go regularly makes a normally healthy person feel "blah", and I think it really takes a toll on people struggling with other problems. My DH gets all cranky if he doesn't go EVERY single day. I have to keep a sense of humor about that. I stopped going about 4 days ago, and I'm ready to scream. ;) Funny, but not. I mean, is it too much to ask?!? We're all dealing with so much here...can we at least get a regular bathroom break?!?! :)

I related so much to your post. I hope you'll talk to your DH about everything you're going through. Feeling alone with your pain and fears is worse than letting your loved ones in on what's going on.

I'll be thinking about you. Hang in there.
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Postby PittyPatty » Sun Apr 06, 2008 8:27 am

Hi Amy Joe,

I'm still on my little getaway, but keeping up a little and your post cried out to me so I had to respond. 4 weeks is too long to be keeping to yourself. You need so share your fears with your DH. It's also too long for you not to be seeing a doctor about the symptoms you are now having.

I know I tend to do the same thing, to keep it inside sometimes, but your dh sounds like a wonderful guy, and you really need to discuss with him what is going on and how you are feeling.

Also, on the bm subject, I think HipCrip has posted several times on the horrors of getting impacted bowels. This is definitely something you don't want to happen if there is something you can do to prevent.

You are a very positive person Amy, and expressing your fears doesn't alter that one bit. All those thoughts you are keeping inside are thoughts that anyone in your position would have.

All the best,
PittyPatty
Last edited by PittyPatty on Sun Apr 06, 2008 9:22 am, edited 1 time in total.
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Postby Amy Joe » Sun Apr 06, 2008 8:48 am

You guys are wonderful. I have not had a good cry in a long time! Thank heavens for a good bathroom visit today! Can you say I AM CLEANSED!! :P :P

I should talk with hubby but he worry's so much and I hate to add any more. He tucks me in at night........

I will call my NL on monday, he is really a wonderful person and very comforting so I will tell him!

Time to pull myself together and shower for work. I will just have to make it till 5pm and then I can unwind again!

Love to you all

Amy Joe
MVA 11/05, Dx CM 7mm 1/06, PFD 10/07/2008
Occipital Neuralgia, POT's, Hashimoto's Thyroiditis, Vitamin D Deficient, Lymes, Celiac
NS: Dr Carl B Heilman
Tufts Medical in Boston
http://www.amyjoeonetoughcookie.blogspot.com
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Postby *Hope* » Sun Apr 06, 2008 9:00 am

YAY for the...you know. LOL!

I was coming back to tell you what worked for me in the past. Kashi cereal on a regular basis seemed to help last week. Today I'm drinking double-strength coffee on an empty stomach. I'm GOING to make this happen. :lol:

I hope you have a good day at work.
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Postby ke4uzj » Sun Apr 06, 2008 11:32 am

amy i know you do not wan to upset your husband , but he needs to know what's going on . at least after you call the nl please tell him . i have faced this same problem with telling my baby , but i look at it this way, if the tables were turned i would be torn up if he didn't tell me .

good luck honey, and i hope today gets better and better
TO BEAT STRESS:
LIVE BETTER, KISS SLOWER, HUG TIGHTER, BREATHER DEEPER, AND IF ALL ELSE FAILS THROW STUFF : )-

Give us a sense of humor, Lord,
Give us the grace to see a joke,
To get some humor out of life,
And pass it on to other folk.
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Postby Amy Joe » Sun Apr 06, 2008 5:52 pm

I started to talk with him on our way into work. We will continue the discussion once I have talked with my NL. I just tod him I am really not feeling well.

I plugged thru work today, sold another vehicle. Today I dressed much warmer since I am outside alot. My body is very fatigued right now, it is pulsing up my back, really intense between my sholder blades.

After I make dinner I am off to a HOT shower and an early night. Well I will be honest I started dinner and my dear daughter is finishing, to much for me. I love her!!! And I love spagetti! Cheap, quick and good!

Thanks for sending me back good thoughts! Hope by tomorrow to be out of this funk!

Amy Joe
MVA 11/05, Dx CM 7mm 1/06, PFD 10/07/2008
Occipital Neuralgia, POT's, Hashimoto's Thyroiditis, Vitamin D Deficient, Lymes, Celiac
NS: Dr Carl B Heilman
Tufts Medical in Boston
http://www.amyjoeonetoughcookie.blogspot.com
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Postby Beverley » Mon Apr 07, 2008 9:33 am

Amy,

Please do tell the NL about your feeling that your one side is a little droopy.
This is very important and you know he is going to want to see you because of it. It may be all stress but you don't want it to become an emergency situation. It is much better if you get check out before it becomes an emergency.

Also about the Lymes, I know that some peope take the antibotics and never have any more trouble from it but I also know that my SIL has recurring problems with Lymes. You should probably get a blood test to be sure it is not still a problem. You symptoms may not be as bad as your previous bout with it.

When we have chronic problems from things like Chiari we tend to chalk everything going on up to it and forget that we can have problems unrelated to CM/SM. Alot of other problems have symptoms that mimic the ones we already deal with on a day to day basis. Lymes is definately one of them.

And you already know what else I am going to say. You need to let your DH know what is going on. He will be alot more stressed if he finds out you are keeping it from him in the end. Sometimes it is more stressfull to feel like there is somthing going on any you don't know exactly what it is.

Beverley
Decompression Surgery Feb 8, 2008 w/Duraplasty & Laminectomy C-1&2
Cervical Disc Fusion 11/08 C5&6/6&7- Mild Disc Bulge L2-Focal Hemangioma
L2-L5-Lipoma 3mm L4&L5-Disc Bulge T11&T12-DDD
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Postby Amy Joe » Mon Apr 07, 2008 7:17 pm

Thanks Bev!

I have been retested several times and nothing shows, so I am told no on Lymes. I have had retests by different dr at different locations so I am pretty confident that I am OK here. My whacky PCP even put me back on anitbiotics for 30 days just to be sure. My NL was not happy so I stopped.

I have a call in my NL, just waiting to hear from him.

DH now knows what is going on. He is supportive of me not working once we get settled in the new house, if and when I want. So if it gets to hard I will let him know and we will make the dicision together. We have 90 days before insurance kicks in, so I have to pay for Cobra. When the insurance starts I will be under him just to be safe.

I worry to much about not worrying him. So silly of me.

Thank you all for the advice and today was a better day. The pain is at a high level but I am emotionally OK.

Amy Joe
MVA 11/05, Dx CM 7mm 1/06, PFD 10/07/2008
Occipital Neuralgia, POT's, Hashimoto's Thyroiditis, Vitamin D Deficient, Lymes, Celiac
NS: Dr Carl B Heilman
Tufts Medical in Boston
http://www.amyjoeonetoughcookie.blogspot.com
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Amy Joe
 
Posts: 2919
Joined: Tue Jan 01, 2008 10:52 am
Location: Fitchburg, Ma

Postby Amy Joe » Mon Apr 07, 2008 7:17 pm

Thanks Bev!

I have been retested several times and nothing shows, so I am told no on Lymes. I have had retests by different dr at different locations so I am pretty confident that I am OK here. My whacky PCP even put me back on anitbiotics for 30 days just to be sure. My NL was not happy so I stopped.

I have a call in my NL, just waiting to hear from him.

DH now knows what is going on. He is supportive of me not working once we get settled in the new house, if and when I want. So if it gets to hard I will let him know and we will make the dicision together. We have 90 days before insurance kicks in, so I have to pay for Cobra. When the insurance starts I will be under him just to be safe.

I worry to much about not worrying him. So silly of me.

Thank you all for the advice and today was a better day. The pain is at a high level but I am emotionally OK.

Amy Joe
MVA 11/05, Dx CM 7mm 1/06, PFD 10/07/2008
Occipital Neuralgia, POT's, Hashimoto's Thyroiditis, Vitamin D Deficient, Lymes, Celiac
NS: Dr Carl B Heilman
Tufts Medical in Boston
http://www.amyjoeonetoughcookie.blogspot.com
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Amy Joe
 
Posts: 2919
Joined: Tue Jan 01, 2008 10:52 am
Location: Fitchburg, Ma


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