View Full Version : What do I do now?

10-08-2008, 02:54 PM
I hate being so new here but needing shoulders to cry on so desperately. I don't know what to do. Every bone joint hurts, the TIA left my left pupil smaller than my right. The heart monitor has recorded six episodes of tachycardia in the last 12 hours. Im nauseous, am always tired but way worse now. If I walk 10 feet I feel like I need to take a nap right where I stand!!

Apparently I look like death. My husband is extremely worried and actually told me, TOLD me, he is going to hire someone to be here with me when he is not. I realize he just cares and all but it immediately set me off. I do NOT need nor need a baby sitter!! I just want to be hugged without it hurting. I want to see him look at me with just love in his eyes instead of concern and fear. I just want to feel better.

And I know seeing the rheumy this coming Tuesday is not going to be an instant cure. I wi;ll not feel instantly better. I would give anything to have it that way.

Ok this is getting to long and I have cried enough tears. Thanks for listening to me....

10-08-2008, 05:04 PM
Oh, Deester, don't worry about being new...needing us....a big head hug..squeeze. Usually when we search out info from the Internet, or people it is usually because we hurt. I was desperate in my first post..I don't think I ever did a proper introduction to the forum, ever. I just let it all out at "I go something like this..." post.

Have you thought to go to urgent care for your rapid heart beat? Do you have low blood pressure? Does it happen when you stand up, change your body position? Anxiety about your illness? After you eat? Sometimes we can't wait till our doctor's appointment. Sometimes we need care now.

Is nausea from your medicine? If so, try it with food. SITC uses yogurt. Having clear liquids, bland food may help if it is ongoing.

I understand wanting to be just loved and not coddled...Out of love, comes the concern, the coddling, the worrying. Can you just snuggle lightly on the bed while watching TV, listening to music...spooning as they say...or face to face and kiss your face lightly...

I wish I could give you, here this will make it all better. We'd all give an arm, the aching one to feel better instantly, eh?

When I feel overwhelmed with emotions about being ill, the never ending aches and pains...why...it has to stop... I do my breathing techniques. Inhale deeply and let out slowly through your nose...relax and again..think calm thoughts, visualize your favorite place, a beach, a garden...a room...people...and stretch.

Think good things and believe tomorrow will be better, emotionally. Sometimes when we heal the emotions it helps with the pains...

Night Deester, hugs...

10-08-2008, 05:59 PM
Gentle hugssss to ya deester

Lean on us all you want to, cause we'll lean right back on you :)

That's what we are here for. As for your sweetie pie, lap it up...sop it up...enjoy his love and concern. Then ask him for a little bell to ring when ever you want something...and ring it often untill he takes it away from you and tells you to get your arse in motions :lol:

In other words drive him bonkers lol jk.

I hope this is just a flare and it will pass. When? I have no eye dear. Flares like 3 yr olds. You never know for sure what they are going to do.

Hugsss and keep leaning on us...we're here.

10-08-2008, 07:12 PM
Oh, Deester, I'm so sorry. This is scary stuff, and your sweetie is just reacting like anyone who cares. My hubby first didn't get it...then, when he realized how serious things were, he was so worried. Our house has 3 levels. I would go to bed so early (top level) and he would want to sit in the family room (lowest level) so he would make sure I had a walkie talkie next to me. He'd beep me every once in a while to be sure I was OK (woke me up...yeah..that helped! :roll:) I'm glad you don't have to go through this alone, but I know how hard it is to lose control and NEED someone to help. It's OK....we ALL need help sometimes. We're still the same person, even so.

The pains you're having; the other symptoms. I think a call to urgent care, or a visit to the ER might be called for. Being that short of breath and energy...could be something that needs care right away.

Let us know how you're doing. We've all been there...and will be there again...in some form or another. Come talk to us whenever you feel the need.


10-09-2008, 06:53 AM
Hi Deester. I do understand the deep bone and joint pain. The need to, and wanting to cry. Would love to know what it feels to have a day with no pain. Not to jump or say "owe" every time someone touches or tries to hug me. Depressing at times. Good you have concerned hubby. Mine I think is still in denile, thanking I can still do it all.

Everyone here is awesome. They've helped more than words can describe. I was a mess (wrote about it in "role call" post). Everyone here let me whine and complained and shared, I found I wasn't alone. You never will be with the people here. They give the love and support and understanding we so desperately need. Keep talking, we're here.

10-09-2008, 01:57 PM
Hey Deester,

We understand completely. We all have those days that a good cry is in order. I hope you are feeling better today. You have a wonderful hubby who is very supportive and obviously loves you very much.

Keep us updated.

Take care,

Faith 8)

10-09-2008, 03:27 PM
aww deets,
I dont know if we've "met" yet but Im Kasey. I was diagnosed last November and spent most of the last year in a flare. I am in a second flare right now.

When I first came I was so loved on here. These people are just such a blessing. Dont ever apologize for asking for support. We all have been there and have a knowledge that only people who deal with chronic pain or chronic illness have.

I am so sorry that things are yuck right now for you. If things get worse please do go to ER or call the rheumy and say I cannot wait.


10-09-2008, 05:43 PM
Thank you all so much. I am on a cardiac monitor 24/7 and I have been recording the pounding heartbeat. I guess if they catch something significant the doctor will call me? She did not tell me to make another appointment or anything. She said my tachicardia was likely the cause of my TIA but they need to find out why I am tachy now.

I spent most of today laying around and haven't had any issues. Crossing fingers this part is almost over. Everything just seems to be happeno=ing in a landslide. A big muddy one I can't climb out of. A few more days and I see the rheumy. Here is hoping he is not a butt and will listen to me and help me.

10-10-2008, 03:23 PM
Hey deester

How ya doing today?

10-10-2008, 04:32 PM
Hi deester..

I'm new as well and just wanted to say that I understand...i actually went through something similar this summer. I was on bedrest for 3 weeks because of tachycardia...we still don't know what caused it, but I'm on beta blockers now, which helps a lot. Sending you positive vibes .

10-11-2008, 01:54 PM
I am really hoping the rheumy will have some sort of answer for me Tuesday. This little box wakes me up beeping and then I have to call the number and transmit the data. Of course they tell me nothing and I heard nothing from the family doctor who ordered it. blah.

I am tired today and it has reached 72 degrees outside but I am freezing. Fingers are like ice cubes! I really just want this all to be over with. Ended, done, finished, but I guess that won't happen until, well you all know when.

Thanks for the support. I am not sure I would have made it through this past week without this place.


10-11-2008, 02:15 PM
Hugs dee,

Sorry you're feeling so rotten. Try to keep warm. Got anything fleecey you can bundle up in?

10-12-2008, 05:46 AM
Hi, Deester...how are you today? Can you soak in a warm bath, nice fragrant oils, to warm up? I hate - absolutely hate - being cold, and I'm sure that isn't helping how you feel. Hang in there....you will get some answers. We're here for you....

10-14-2008, 06:17 AM
Hi Deester;
Just wondering how you are doing today, Tuesday? I know your weekend was stressful and that you afraid. You mentioned that you'd get some answers today, just wondering what those answers were.
Waiting to hear from you.

Peace and Blessings

10-14-2008, 11:45 AM
Hi Saysusie. I am so very tired after spending 2 hours at the doctors then another hour to get my new scripts. Blah. I posted in Diagnosis about my day. Thank you for checking in on me!

10-14-2008, 02:22 PM
Hugs deester

Keeping you in my thoughts and prayers.

10-15-2008, 06:49 PM
Wow I hate to sound like a whiner here but...I thought that seeing the rheumy finally would bring at least some mental relief or something. But no. Nothing feels diff at all. My heart is still working over time, my skin all broke out from the leads on the monitor. I am so tired I can not stand myself! I go to bed and then just lay there. Can't get to sleep. How can one be so tired and yet not be able to fall asleep?? My hips are killing me since he twisted em around yesterday and made them pop. I sound like a popcorn maker on most days, I don't need the doc to do it on purpose!

I know I am worried. Haven't heard from the doctor yet but again, I don't know how long it takes for the lab to run the tests he ordered. Then I had a dream last night that all my ANA and other tests came back completely normal and they refused to help me and had me committed! I woke up shivering and soaked with sweat and just cried. I know I am not crazy and I just want relief.

My husband has eased up on me some and become more lovable and careful and less overbearing. I guess I should be thankful for that at least. I just don't feel very thankful for anything at the moment. blah.

10-16-2008, 01:01 AM
You don't sound like a whiner Deester. The pain and frustration you are experiencing is more than enough to wear down even the toughest of people. Many times our doctors and rheumotologists do more to add to our worries than alleviate them. I'm glad your other half is being more supportive, sometimes that can make a huge difference. I have terrible dreams sometimes too. What kind of disease makes a person have nightmares about them NOT having the disease? It's insidious, and this disease can "mess with your head". Unfortunately, it seems to be the hardest on people who have yet to be diagnosed. There are too many people who are in limbo with no answers. Try to go easy on yourself Deester. Hopefully, the anwers you need will come soon, and you can begin to do what has to be done to take back your life. Until then, we're here. Lean on as many shoulders as you need to.


10-16-2008, 03:02 PM
awww hugsss deester.

Probably a week to two weeks for lab results to come back.

Sorry you are hurting so much. Gentle hugs to ya.

10-17-2008, 12:34 PM
Deester, this is the place to come to vent - no one here will every call you a whiner. You're in that terrible 'no-man's-land' that comes between getting sick and knowing what it is that's making you sick. It's a very 'sucky' place to be, no doubt about it. Keep pressing for answers - the more you learn about your symptoms, your lab results and what they could mean, the better armed you'll be when you see your doctor next time. Don't be afraid to push a bit to get what you need. (Or push a LOT if you need to!) If your hubby can do it, take him with you to the doctor's office. I think it would be helpful to you, the doctor, and to your hubby. I hope things improve soon, Deester.


10-18-2008, 02:20 AM
How ya feeling deester?

Keeping you in my thoughts and prayers.

10-18-2008, 08:21 AM
Feeling about the same. Went to bed early last night and got up at 11 a.m.! Slept right on through everything yet I still feel exhausted. Maybe I overslept this time. I dunno. Still no word from the doctors and I am fighting the urge to call them and be annoying on Monday.

It is 39 whole degrees outside and that is not helping me at all. I am soo soar and soo cold.

Are you sorry you asked now Sits?

10-18-2008, 11:09 AM
Not in the least bit sorry...

:microwave: thinking of ways to cook myself to warm up. Where's a hot flash when ya need one.

I'm sore too, stupid cold wind is making me ache all over. I think I parboiled myself in the shower this morning just cause it felt so good.

:scatter: Dont ya hate that phazed feeling when you've over slept? Kinda stays with ya. Not like your head clears up.

See how you feel Monday. If you want to call them...then call. Squeaky wheel and all that.

Hugs, be kind to your joints.