I go something like this.....

Faith · Posted: Tue Jul 22, 2008 10:21 pm Post subject:

Hey Oluwa,

I am glad you don't have the rash anymore. It does not sound like fun; though I am envious of the salt chlorinator. I am dreaming of one someday along with Willie.

Had MRI and it came out normal. My GP sent me to Hematologist (last Thursday) due to Antiphospholipid Syndrome and he ordered more labs on top of GP, and Neurologist. Go in for an echo tomorrow on my heart due to an irregular heart beat and possible issues with mitral valves which is "typical" of Lupus. Thursday am have to wake up at 4am for an EEG test at 8:00 am. Friday, I get to have fun with lower nerve conduction studies involving needles into the nerves since being diagnosed with Neuropathy in my feet. They took 8 vials of blood, 2 veins collapsed and finally finished the last 3 on the vein in my hand. Monday ate red meat and was saluting (vomiting) the toilet bowl praying for it too stop at 12:45 am. Next Monday is follow-up with GP along with follow-up with hemotologist sometime the same week. The following week follow-up with rhuemy. My life now revolves around dr's visits almost everyday if not every other day. I am tired of being tested, poked, hammered on, etc. Joints, feet, and fibro acting up severly. Lupus labs are within "normal" range. Does Sjogrens cause joint pain similar to Lupus?

I am sorry if I am whining. I just need to vent.

Thank you and take care,

Faith Cool

cheryl_v · Wolf Joined: 06 Jul 2007 Posts: 540

Hi Faith, vent all you want sweetie. You definitely deserve it. Wow, you poor thing. No fun being the little lab rat, is it. Hopefully you'll get a break from all those appointments. Maybe that'll ease the joints, feet and fibro for you. Hope you feel better soon. Your in my thoughts and prayers.

Oluwa · Posted: Wed Jul 23, 2008 8:05 am Post subject:

Faith,

Well, aren't we popular with all the doctors..all those dates. Ya...Egads..eh?

Hopefully this week will be the end of them..and something, someone will reveal something.

I have Sjogren's too...one of its symptom is joint pain. For me, joint pain is joint pain..so who, SS, FMS or IT comes from. It all hurts...

But at lupus.org it reads...Symptoms that show up outside the glands are seen in one-third of people with primary Sjögren's syndrome, but rarely in those with secondary syndrome.

These extraglandular symptoms may include:

* joint pain
* muscle pain
* low-grade fevers
* increased fatigue.

Follow the link... http://www.lupus.org/webmodules/webarticlesnet/templates/new_aboutaffects.aspx?a=104&z=17&page=2

Feeling better after the toilet bowl visit last night? I hope so...hugs...

Be well, girl..
Love,
Oluwa
_________________

NoodleMom · Alley Cat Joined: 09 Nov 2007 Posts: 197

ooohhh Faith, pin cushion.....OUCH! Sounds like youve been thru the wringer.
Hope some answers come your way soon.

Kasey

mnjodette · Posted: Wed Jul 23, 2008 4:03 pm Post subject:

Faith, I'm so sorry you're the latest lab entertainment. I've had nerve conduction tests done 3 times. It's like some technicians excuse to play with needles and a Taser. Ouchie, ouchie. I hope yours goes quickly and as painlessly as possible!

I also have Sjogrens. I saw a rheumatologist who is a leading researcher in Sjogrens and she said (like Oluwa posted) that it's primary Sjogren's that has all of the symptoms that are so similar to lupus. Primary Sjogren's means that you have SS without another autoimmune disorder. If you have another autoimmune disorder (like lupus) and also Sjogren's, then you have what they term Secondary Sjogrens. Generally, that just means dry eyes, dry mouth.

I hope your long string of doctor's visits will be over soon.

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

NoodleMom · Alley Cat Joined: 09 Nov 2007 Posts: 197

hey girls. Where are we all?

ROLL CALL

Im here

cheryl_v · Wolf Joined: 06 Jul 2007 Posts: 540

Here too, looking around Very Happy

.

Oluwa · Posted: Mon Jul 28, 2008 10:17 am Post subject:

Here I am...my husband did arrive home for the weekend..yea...departed this AM.

Nothing new, nothing to report...samo, samo..nothing better, nothing worse with IT. Should I be thankful..hummm. I am and hoping for mo' better.

Spine is feeling so much better, happy to say.

Hugs,
Oluwa
_________________

Oluwa · Posted: Thu Jul 31, 2008 3:15 pm Post subject:

I go something like this...

Life is still good...IT is being extra kind to me these days. I do believe it is from changing my thoughts that I associated with things that caused me stress...relocation, new home built, traveling man...

And..exercising regularly, swimming...to keep the oxygen and blood flowing through my body. Sit and lay to much and it settles to the bottom. Swimming has been my medicine...with the short fins, thanks Saysusie..

Also the supplements I have added to my pill box, the fish oil, super B complex, CoQ10 and the most recent ones..amino acids, L-carnitine, L-tyrosine and L-arginine.

The foods I select to ingest. Mainly anti-inflammation foods, the red, yellows, greens and blues. Berries, fish...

I believe sleep and exercise is key to feeling well, well...our wellness, what we who have Lupus call our norm...the normal everyday mild aches and pain.

My PT has been doing wonderful things for my spine...I don't think I will become a jellyfish after all.

After seeing another GYN, it has been said I do not suffer from amenorrhoea, but post menopause. As my Dad would say, I am a dried up Doe..ugh. Wondering when that happened...as I never developed many personalities. Pyscho. Just me, and the crankiness IT brings....

Over a year ago, I thought life was over as I knew it..it was, I adapted, I allowed the change to happened and accepting the change I alleviate much stress too.

I am just living another facet to my personality. A moderate, not an all at once on a move girl. Sure, at times I yearn for the old...and I also look forward to the new.

Over a year ago, I had myself in the dirt..'This episode has been three months, it is getting old and as each day passes I am too a day older. Closer to the dirt than I am to a dance floor.' I wrote....instead, in the dirt, I have planted flowers, trees and shrubs....whooohooo....

Over a year ago I wrote..'Does just being alive matter? I lost my creativity. Will I ever get better? This is the most I've done today, writing this..this ..this thing called my life'

I may get bored, I may grumble but it is going to be alright..being alive does matter. And I matter to a lot of people...

Indeed, I am blessed.
Love,
Oluwa
_________________

mnjodette · Posted: Thu Jul 31, 2008 5:10 pm Post subject:

Oluwa! What a great post. You go girl...you just continue to GO! So nice to hear your philosophy. A new normal. Life isn't over - just not the same. I need that reminder. Over, and over and over I need that reminder. Still crawling out of my little hole (not a big hole....just a little 'dip'....) But, finding hope again.

By the way, the biopsies from my upper endoscopy test? Negative!! Yippee...no Barretts, no HPylori. Just inflammation...from IT, I'm sure. But, if I follow the rules for reflux disorder I should be okey-dokey. Doubled the Prilosec...already helping. Still likely have IBS, but I'm learning to manage that, too.

Finally started the Anti-Inflammation Zone book. Interesting.......

Hugs, Oluwa....hands are giving me fits tonight...probably no more posts this evening. G'night!

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

Oluwa · Posted: Fri Aug 01, 2008 8:58 am Post subject:

Hey you Jody,

Lovely to read you. Even a little dip for us can feel like a crater. Head hugs. There is always room from h-o-p-e..hope, with a dollop of whipping cream.

Yippee...I'm so happy, you know what I mean, it is just gastritis ...that can heal. I have that too..I mind my onions, pepper, spice... Mine feels pretty good lately, I haven't taken my Protonix for a few days..

Do you eat a high fiber diet? If so, lowering the fiber may decrease the IBS..the loosies. Any fructose in your diet. That too can be a trigger.

In the book I don't recall if it mentions inflammatory foods, other than unfavorable carbs... some of the inflaming foods are foods that high in refined or hydrogenated vegetable oils such as those found in margarines, potato chips and baked goods and by diets high in sugars. And red meats, fried foods.

Have you ever tried a vegetarian diet, not vegan..? Maybe consider that for a week, eat and fresh and see how your hands feel...

Have you tried omitting wheat products, and by products?

Have you added omega-3 oils, it is present in flaxseed oil and in cold-water fish, like tuna, salmon, herring, trout, mackerel, sardines, and cod liver to your diet yet. That may help, well not immediately but they are supposedly helpful in relieving morning stiffness and tender joints by reducing the inflammation.

I eat tuna and salmon weekly, but I also dose with 2400mg of fish oil daily. I don't know if it is coincidental why I am feeling better, but since supplementing my diet with more fish, vitamins and exercise my symptoms have decreased. I also avoid, as much as I can, preservatives and additives.

I doubt if we can ever get totally rid of the inflammation IT causes, but I believe we can keep it to a minimum through our eats too...

Have you tried wearing the arthritic gloves?

Thinking too much about what use to be, can be very stressing.

Sometimes if we just clean the table off, rid ourselves of the clutter that fills our heads and hearts of family woes.. it can make a huge difference. We try to own their problems, trying to solve them but in the end it just aggravates IT more and we become of use to no one, not even to ourselves.

Are you still working? Did you get the voice recognition software?

It's Friday..have a great weekend and find joy, in spite of the pain in the day, relax...avoid all the stress givers.

Eat for your fingers!

Head hugs.
Love,
Oluwa
_________________

mnjodette · Posted: Fri Aug 01, 2008 3:21 pm Post subject:

Hi, Oluwa. Thanks (as always) for all of the good advice. I eat pretty healthy - try to have something like salmon once a week at least. I also take omega 3 fish oil three times a day. I haven't been eating red meat for several months now. Meals are often a small piece of fish or chicken and a fresh vegetable. If my husband wants red meat, I will often just scramble an egg - suits me just fine. I eat some whole grains, but not what I would consider a high fiber diet. I do indulge in ice cream now and then - gotta' have some vices!

Had an absolutely horrible night. Joint pain - fingers, wrists, elbows, knees, feet. I took a Trazadone and 2 Aleve, but got almost no sleep at all. I changed bedrooms, tried drinking a glass of milk, got up and read. I think I slept about an hour. Should've gone into work, but there was no way I could. I've been napping a bit today, but will be heading off to bed soon - so tired my eyes are crossing.

Haven't activated the voice recognition stuff yet, although I'm pretty sure it's loaded on my computer. If my hands keep getting worse, I'm going to have to do that. I won't see my new rheumy until October, so I'm not sure if I can get anything different for my joint pain until then.

Still working - half time. There are weeks I just don't think it's a great idea, but other times that I can't imagine sitting home. I don't think I'd be able to get social security disability - just doesn't seem like I'm sick enough for that - and right now I'm carrying our health insurance. So, I'm kind of stuck for a couple of years. We'll see.....

How are you? Still feeling good? I hope so!

I should let my hands rest. My joints are 'lumpy' - this is getting very old. Sad

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

cheryl_v · Wolf Joined: 06 Jul 2007 Posts: 540

Glad doing better Oluwa. Sorry for the joint pain Jody, in time hopefully it will ease.

Oluwa · Posted: Mon Aug 04, 2008 8:16 am Post subject:

Something sucked the life out of me....IT??? Off to PT with what little energy I have left from showering and ratting the hair.

Wha...happened this weekend....Z-z-z-z-z-z-z-z-z..put, put, sputter...cough, cough. Driving on fumes...

Chat up when I get back, if the therapist leaves me with any vavoom to drive home with.

Love..hugs,
Oluwa

And Happy Monday...
_________________

cheryl_v · Wolf Joined: 06 Jul 2007 Posts: 540

In the same state here, barely putting along. Did too much last week I guess. Conserving energy for son's 15th BD party saturday (tons of teens coming Shocked

). Another store-bought cake and ice cream, no home-made this time either. Nieces are coming tonight to help a little this week. Good kids, I'm needing them this week. Physically and emotionally drained Sad

.