Hellooooooooo.....Oluwa? You there?

mnjodette · Posted: Tue Jul 22, 2008 6:41 pm Post subject:

Oluwa, how are you? Good to hear from you. I'm so glad the rash disappeared....but not the itch??? Hmmmmm. Yes, it's always something. How is the PT going? Back still feeling better? I'm catching up on posts....feels like I've been very absent.

Cabin weekend was a comedy of errors, family conflicts and disappointments....but also hilarious moments, a very happy granddaughter, and some bonding. So....the usual for my family. Just wish we could (on occasion) all be together without sending my stress level through the ceiling. Can't choose your relatives, though, huh? I shouldn't complain....no serial killers or anything terrible! We just have the usual 'baggage' that exists in most families.

I have an appt. in the endoscopy dept. for an upper scope on Thursday morning. Not looking forward to that. My rheumy sent them my records and they said I needed the procedure soon - so they got me in quickly. My guess? Just plain old reflux (your friend GERDIE.) My rheumy thinks that an esophageal problem may be causing some of my chest pain. We'll see.....

Feeling less than stellar...headaches, joint pain. Lots of anxiety - and very little sleep. I'm at a loss. I'm almost done with the 'scaryoids' (which is good) but I'm not thrilled with how I'm feeling. Don't think it's related to the tapered prednisone though, because I've been on such a puny dose for quite a while. Like you said....it's always something.

I'd just like a really normal day...... Smile

Jody
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"Always laugh when you can. It is cheap medicine." Lord Byron

Oluwa · Posted: Wed Jul 23, 2008 5:50 am Post subject:

Hey Jody...

Yes on the family...I too think families all have baggage..in our family we do, but we have good baggage handlers...we usually don't bring it to the family get togethers. We usually talk to one another about the issues or vent to one or two, outside the family events and deal with issues that way.

Though we have one brother who is a tad different...we watch him, listen to him..and when he seems to cross the line one of us steps in and tells him needs to stop and this is not the time. And usually the one that does...well, ends up being the brunt of his wrath for the day and sometimes months to come. One out of eight siblings that isn't too bad. We love him just the same.

He is fun, crazy but he has a direct opposite..mean and hurtful. I wonder why...he missed something, a lesson while growing up in the same household..hummm.

Are they going to put you under for the endoscopy? I was knocked out. I don't recall any pain, even after they dilated my esophagus...maybe burning...

My esophagus and tummy issues caused great big, big pain..since ridding myself of H. Pylori and dilating my tube...better, better..best. I use to have horrendous chest, neck, upper back pain from it..constant hunger or full bloat...who knew I would feel such relief till they fixed me up.

Even if you don't get the heartburn...it still can cause much pain. Almost like a heart attack...crazy. I hope you will be able to find relief like I have.

They moved my GYN appointment to tomorrow instead of August 6... Yea! And I have a RhuemBa appointment tomorrow too. Turning them out, my symptoms, one by one. By fall I should be good to go.

Have you tried to find a calm within you...pain, then headaches,. then stress, tired, sleepless..into anxiety.what a vicious circle. After days of that it is hard to figure which started the race. I know when I feel like that. I have to step in and break it up by finding a calm mental state through myself, then tackle the pain.

Yesterday I was feeling overwhelmed with pain, I was tired..I cried. Then that domino affected into feeling alone. It, I snowballed.

I cried and prayed to God why do I have to be so alone. I always believe He answers me, because I do, really I do, I hear a reply in my head. "You have me, I am always with you.." I replied..."but you gave Adam..Eve" I stopped my prayer, felt funny questioning His words.

I showered and again pleaded and prayed to take the pain away while standing in the running water. I found a calm within me. The panicky feeling was gone. I did short snivels..like rapid hiccups till they slowed down and I found a calm..the pain was still there, but it allowed me to remain focus, in the moment and stop thinking so mindlessly.

Took a Flexeril, Lortab..made spinach and chicken...drank a hot cup of Sugarfree, caffeine free Mocha at bedside..and I slept like a baby.

I still fell tender, but with the calm..the anxiety, the sadness gone it doesn't magnify the pain....

I hope there is relief for you...a normal day.

Be well I will ask...
Hugs,
Oluwa
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mnjodette · Posted: Wed Jul 23, 2008 4:17 pm Post subject:

Thank you, Oluwa! Such good ideas. Sounds like you feel some of the same 'aloneness' sometimes. My hubby is rarely gone, but sometimes I feel so alone, even when he's here. You understand.....You always seem to find the heart of the matter.

I'm glad you're tackling your symptoms one at a time...and with success. That's worth a celebration!

I keep trying to find calm...peace...some measure of 'goodness' in my days. Some days I manage - many I don't. To be truthful, that's why I'm just not posting as much as I once did. I've been in a less-than-great place too many days and I just can't find it in me to share, or to be of any use to anyone here on those days. Funny....I think I managed this crummy disease better when I was very sick. Now....I keep thinking this is as good as it's going to get, and it's just not very good. My hubby is generally very supportive, but once in a while he says "this just isn't the retirement I expected." Depressing..... Sorry for the rant...but I know this is "rant central", right?

My sister is coming this weekend. With some luck, I can pull on her ear for a while and find some solace. She's a good soul.

Thanks for listening....

Jody
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"Always laugh when you can. It is cheap medicine." Lord Byron

Oluwa · Posted: Wed Jul 23, 2008 6:03 pm Post subject:

Hey you, Jody...didn't you have a Birthday Monday..
Happy Birthday to you!

Happy Birthday to you!
Happy Birthday Dear JoooooooDy!
Happy Birthday to you...

You don't have to apologize, Jody for anything...ranting or the like. I know how you feel...feelings of... is this as good as it gets. Has that feeling increased since your birthday?

I've felt many days like that last year. And a few times it has crept in this year. And I disappear, feeling I haven't much good words to contribute either..feeling I need to isolate, hide because I don't feel like myself...

But sometimes when we reel it out, it helps us to find our way back to our normal self...a mental feel good. A better outlook feeling.

I don't know how I find my way back, usually a good bawling, but I do...to prod on, to have hope...something clicks and I go at it again...

I know you have been weaning off the steroids..I think it is what is contributing to your symptoms resurfacing..then the symptoms create the emotional and mental state of bleak, depression and the vicious cycle begins and our mind runs with it..

You've not slept well for a long time, when did that start? I know it has been atleast 3 weeks, eh?

You are having so many symptoms, doesn't sound like remission. Maybe you should gradually increase your steroids till you feel better, under the guidance of your doctor of course.. or perhaps find another combination of drugs instead of the Cellcept with Plaquenil..

When is the last time you seen your RheumBa?

I know you probably feel responsible for your husband comments..a bit insensitive on his part, a bit of frustration too. You didn't expect it either.

When you were very sick and handling the disease better was it because you had hope, knew there had to better, so you had optimism?

Emotions, negative thoughts can wreak havoc on our physical well being...maybe when your sister is there..maybe you two can go to a spa..see a movie together, take a drive away from it all and chat up. New hairdo..new outfit...dinner. Something to take you away from the home for a day...from family thoughts. To be all about you...

Your Gastro appointment is tomorrow...they will help with your tummy issues..like me, it will be one symptom down. And I tell you when the stomach is ailing it affects us a whole lot...could even be the cause for your headaches. My gut pain radiated to my neck, chest, back and shoulder. I was inflamed...

Find a dark cool quiet place in your house, close your eyes and relax.. Dark, cool..??? Whaddya a potato???

Head hugs...let me know how tomorrow goes..
Love,
Oluwa
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mnjodette · Posted: Thu Jul 24, 2008 9:59 am Post subject:

Yes, it was my B'Day on Monday - #58...sheesh. Family had a nice party for me while we were at the cabin. Nice gifts, cake, sparklers....very sweet. That part of the weekend was good.

Oluwa, the things you wrote make sense. I think when I was first sick, I was a bit shell-shocked and so focused on learning about IT and fighting back, that was enough to keep me motivated. There were lots of tears, of course, and I was scared. But I once I started learning, I had hope. Some days now, I don't feel so hopeful. I try to keep it in perspective - things could be SO much worse - but still I get very down.

I see rheumy on Oct. 1st. It will be my new doctor. If I feel badly before then, I can call and talk to someone else there.

Had upper endoscopy this morning (very early.) Just feeling a bit more awake now - sedation had me soooo sleepy for hours. They did a couple of biopsies, based on what she saw in there. Two things possible: Barrett's Esophagus and H.Pylori infection. Doctor saw signs of both, but the biopsies will confirm whether or not those signs mean anything. My symptoms could easily be in keeping with one or both of those problems. I would rather it be just H.Pylori, because it's fixable. Barrett's isn't really reversible.

She doubled my Prilosec dose and advised me to take it an hour before I eat anything, once in morning and once in evening. Also told me to quit eating chocolate. Not sure if life is worth living without chocolate. Wink

So, guess I have to wait and see. Like you, Oluwa, I'm just going to tackle these things one at a time. Today, tummy. Then, I'll work on headaches. When I see rheumy again, we'll talk about joint pain. One foot in front of the other.....right?

Thanks again, Oluwa.

Jody
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"Always laugh when you can. It is cheap medicine." Lord Byron

Pretti in Pink · Posted: Thu Jul 24, 2008 3:08 pm Post subject:

Happy Belated B-day Jody!

Glad you had a nice time with your family.

I'll be praying all turns out well with your test and witing to hear the good news.

Oluwa · Posted: Thu Jul 24, 2008 4:52 pm Post subject:

Jody,

I'll give up my Hershey's Plain too, for you...I don't need the calories. It was like my baby bottle. Ate it when frustrated...so here's to no more chocolate. If you do eat it...rinse it down with milk.
Is Prilosec an acid pump inhibitor? My Protonix is. I had to double up too after the endo...

Once that H.Pylori was gone, I felt soooooo much better. I hope and pray that is the only thing that is in there using your body as a host. They say many Americans have that bug...I also had gastritises.

I was prescribed a pill box with antibiotics and acid inhibitor. I think it was like 7 pills in the AM ands 7 again in the PM...for 14 days.

Your results will be in by Monday?

It's so crazy.. the wait for an appointment. I had just seen my GYN this morning. They canceled August 6, I whined I was scheduled then for today. She said by the test I had with the Veterinarian, I swear she, the former GYN treated animals..but anyway, but the lab results read I am postmenopausal.

Now why didn't they say that instead of me trying to dose with Progesterone, telling me I have...amenorrhea. My menses just stopped, no waning, no heavies...zip, gone one day and never came back. For awhile, I thought it was because of Lupus...I am confused..who am I.

I asked her about the D&C and she sees no reason for it, unless my lining is thickening even more so. I have an Ultrasound scheduled for the July 29..

Yep, tackle them one by one, then it feels like we are making progress. Kind of like a desk filled to the ceiling with paper work...One pile at a time and our work will be done.

Headache...My Mum taught me to tie a folded like a head band scarf around my forehead and tie it in the back. Slightly tight to draw the blood around the head, instead of pooling in one spot. Do you have an ice bottle...or use a plastic zip bag with a wet rag and put a bit of water in it and loads of ice and set it on the back of your neck..more at the base of the head...

Have you evaluated the meds you take and see if any say headache as a side effect....

For me, the joint pain, subsides while I swim and while I shower, maybe give those a try. A couple of showers a day is nice. Times I don't want to step out of mine. I know if I don't move, stretch I settle into more pain.

Have you started to incorporate the Anti-Inflammation diet into your day?

It is okay to feel down every once in awhile, but has it been going on for weeks?

It probably seems a bit hokie, but have you tried meditation, visualization...to help with the pain, your feelings about it in your life. Sometimes exploring outside of our norm can be beneficial.

I wish everyday of the week all seven days can be good for you...head hug.

Love,
Oluwa
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Oluwa · Posted: Mon Jul 28, 2008 10:23 am Post subject:

Jody,

I am missing you....still bumming about the chocolate. Wink

I hope you have called the Rheumie ask to be seen earlier, because it sounds like you are not doing to good, girl. Headaches can be mean. Call, okay...

Thinking of you,
Hugs,
Oluwa
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mnjodette · Posted: Mon Jul 28, 2008 4:25 pm Post subject:

Oluwa, you are so sweet (hmmm....a pun, I think) to join me in giving up chocolate! Much too big a sacrifice, I think....munch away. I haven't heard any test results yet, so maybe it's a case of 'no news is good news' as far as the tissues/cells they biopsied. A pre-condition.... But, I will still need to mind the rules. Without really intending to, I've been doing that for a while: very small meals, little or no coffee, nothing spicy or acidic. The chocolate? Well......maybe just a little.

I had a nice weekend with my sister. We went to an art fair on a beautiful Wisconsin lakeshore town that was voted one of the 10 best artists communities in the country. It was gorgeous - warm, big fluffy clouds, a nice breeze off the lake - and plenty of shade!! I was dressed head to toe, slathered with sunscreen, big hat. My sis is easy to take; sensitive to my limitations. So we rested frequently, and I did pretty well. It was a pick-me-up for me. I can feel a bit of let down today again...but I'm working against it. Keeping my head above the 'crummies'.

How are you? Swimming? PT still helping? I imagine your flowers are just wonderful. Have you been gardening?

My trip to SC is coming up in about 3 weeks. I am trying to prepare for the heat. We have plans to do some things that will mean walking around outdoors (it IS vacation, after all!) I think I will pack a small, very colorful umbrella as a sun shield, in addition to the usual hat.

A big thank-you HUG for all your kindnesses, Oluwa. You helped me more than you know.

Jody
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"Always laugh when you can. It is cheap medicine." Lord Byron

Oluwa · Posted: Fri Aug 01, 2008 9:23 am Post subject:

Hi Jody

Tell me about your crummies, whats on your mind. I know your pain and etc is, but there is something else, eh?

Sometimes the medication we take, least in me..can promote the blues. The pain relievers, the muscle relaxers...causing a melancholy mood.

It is hard to avoid since we must take these medicines at times, but for me just knowing it does that to me, I know there is an end, it will pass and I accept the feeling because I know the cause and would do things to keep my mind occupied, focus and not dwelling.

Are you anxious, in the nervous way about your vacation?

Gardening, too hot. I've been indoors getting freezer face from the A/C.

It is the weekend again..I hope you are able to find me time again...

Head hugs,
Oluwa
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mela · Tadpole Joined: 04 Jul 2008 Posts: 18

Oluwa,

You posted this on July 23:
"Yesterday I was feeling overwhelmed with pain, I was tired..I cried. Then that domino affected into feeling alone. It, I snowballed.

I cried and prayed to God why do I have to be so alone. I always believe He answers me, because I do, really I do, I hear a reply in my head. "You have me, I am always with you.." I replied..."but you gave Adam..Eve" I stopped my prayer, felt funny questioning His words.

I showered and again pleaded and prayed to take the pain away while standing in the running water. I found a calm within me. The panicky feeling was gone. I did short snivels..like rapid hiccups till they slowed down and I found a calm..the pain was still there, but it allowed me to remain focus, in the moment and stop thinking so mindlessly."

I realize it has been some weeks but I just had to post this. Word for word, i have found myself exactly in that spot, crying due to the pain, showering and hoping you don't snort in the water during those hiccup cries. I shouldn't be surprised that fellow lupies have many common experiences but I have to say, this one caught my attention because I have always felt that if someone saw me crying over my pain they would think i was over-reacting or nuts. In the short time that I have been a memeber of this forum you have made me laugh and cry (mostly in a good way), so for that I say thank you!

Mela

PS
Jody, I know what you mean with your husband around but you still feel alone, I have those same feelings.

Oluwa · Posted: Thu Aug 07, 2008 9:14 am Post subject:

Mela...

Your words just made me feel a good misty, eye brimming feeling inside. Too sweet. When I read it yesterday..I was in pain. I was feeling alone..even if my husband was home. I sniveled a happy, heart touching snivel. It is wonderful to be heard, you words are felt. Thank you.

I am happy to know I brought good cries and laughter to you spirit. It makes us feel alive, doesn't.

How are you today?

Be well, Mela..
Hugs..Love,
Oluwa
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Oluwa · Posted: Thu Aug 07, 2008 9:45 am Post subject:

Jody, hey you...

Pain minding it's business yet? I was saying, mentioning on the other thread, maybe up your Prednisone a bit for your vacation..Or don't tell me you are already on it...next week?

It is suppose to start cooling off tomorrow so, hopefully no sweltering heat in SC for you..

I am worried about you to be in pain and sleepless for so long...I hope you don't have to wait till October 1. Being in such pain that time could seem and feel like a 100 years. One day of pain can feel like a never ending day.

Have you asked your primary about a FMS prescription regime for your sleep..such as Lyrica, combined with Mobic, Flexeril, Elavil and Lortab. That helped me through a rough, sleepless time earlier this year.

On the other thread you mention your dinners, eats are good, so that shouldn't be aggravating your symptoms...

How's da blues?

If you are not on vacation, I hope you are looking for ward to it..the rest. Sit under the cabana and listen to the waves roar at night while sipping on a thermos full of margaritas. I can hear the waves breaking now...close your eyes and envision and hear...it will be a good vacation and a much needed one, eh...

Sending you my love and head hugs,
Oluwa
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