Just needing to vent on symptoms.

cheryl_v

Horrible day. The jaw pain's still here, stronger though. Left foot feels like it will explode from pain one minute, then barable the next. Feels as if just bones, and lots of pressure pain on top. Want to puke, can't eat. Haven't eaten today, food not appeling at all. Nasty headache, sore and so tired. Couldn't sleep,even with new meds. Tossed all night and couldn't get comfy. My eyes hurt so much. One minute vision a little blurry, next fine. Even my teeth and hair hurt. So much at once to deal with, along with 3 kids and hubby and house to clean and food to cook. Feel as if I could sleep standing up, light headed too. Every time I go see doc, they just want to give more steroid packets. No help there, except making my blood sugar go up Rolling Eyes

. Just what I need too.

Thanks for listening, feels better to gripe about it for a moment to someone. Without the roled eyes behind your back, you know?
_________________
Cheryl

To the world you may be one person, but to one person you may be the world. (author: Nick Miller, I believe)

cheryl_v · Posted: Sat Jul 26, 2008 1:16 pm Post subject:

Also forgot to add painful wrist, shoulders and upper arms. Grinding knee caps with sharp pains to boot. What a day Rolling Eyes

. I sure hope tomorrow's better.
_________________
Cheryl

To the world you may be one person, but to one person you may be the world. (author: Nick Miller, I believe)

Kimmy · Posted: Sat Jul 26, 2008 2:23 pm Post subject:

Hi Cheryl,
I'm sending you hugs. I'm sorry you are having such a rough day. I also have terrible jaw pain and I know how horrible it can be! I hope tomorrow will be better for you!
Hugs,
Kimmy

Pretti in Pink · Cobra Joined: 12 Mar 2007 Posts: 451 Location: Texas

Cheryl ,

Sorry you're having a rough go at it right now, I'm sending some healing power you way....... Can you feel it? Not yet, okay, let me try again, just a little stronger this time........ Any better?

cheryl_v · Posted: Sat Jul 26, 2008 2:44 pm Post subject:

Thanks Kimmy and Pretti in Pink. I recieved your hugs and ealing power sweet ladies. Got my butterfly net nearby, nabbed it real quick Laughing

. This family of good support friends is always a help. Thanks for listening without the rolling, not again eyes.

How is eveyone else today? Thinking of everyone Very Happy

.
_________________
Cheryl

To the world you may be one person, but to one person you may be the world. (author: Nick Miller, I believe)

Saysusie · Posted: Sat Jul 26, 2008 6:18 pm Post subject:

Cheryl;
Thank you for thinking of everyone today Laughing

Here at WeHaveLupus, you will never get the "not again" rolling eyes, you will never get judgmental responses and you will always find people who genuinely care!!

We are all glad that you are here Laughing

Peace and Blessings
Saysusie
_________________
Look For The Good and Praise It!

cheryl_v · Posted: Sat Jul 26, 2008 8:10 pm Post subject:

Thanks Saysusie. I think of everyone here a lot. Everyone has become my little family who really does care and understand. I feel helpful too just literally knowing the pain we all share. Around me everyone seems to show concern for only short peiod of time, or just to my face. I hear them say "didn't she say that all last week, can't still be a problem". Or when I had the shingles, "she only has a couple little bumps, can't be painful. so why say it hurts if there's nothing there to see". My fav: "how come she limps only sometimes, not all the time. probably faking it too". Everyone forgets I have very keen hearing, was born that way. It really hurts when they don't understand and say that. When some family is ill and keep complaing, they look at me and say "its real, you can see it". I'm not asking for pity, just understanding. Please have patience, it just takes me longer these days to do things and this is why.

That's why I love it hear. No one cares if you complain, even if repeatedly. We understand all to well. If we want to scream because we're mad, there's someone saying "vent, let it out". Not "oh please Rolling Eyes

". I have been a little depressed hating this body I know have. Then I think of the people here and there pain, and think that maybe I have it to be that understanding ear. That's what keeps me going at times. That, you guys and my kids need a mother to care for them. Sorry Embarassed

, emotional day. Needed help, and no one did. Took Oluwa's advice and left the chores for another day (I'm a neat freak).

Little better now. Cooked myself some homemade creamy parmesan noodles and made a coconut cake. The smell of the food got my tummy growling (love to cook, theraputic). When kids went to bed, I grabbed my mp3 player and went for a long slow walk by myself for 40 minutes. Then came home and soaked in tub to ease the pain. Then lil miss woke, but was calmer and able to handle it easier than normal.

Love to hear what everyone does to unwind. Maybe give each other a fresh idea.

My relax:
reading
walking
swimming
hot soak in tub
music and close eyes invisioning images
cooking or baking

How about you?
_________________
Cheryl

To the world you may be one person, but to one person you may be the world. (author: Nick Miller, I believe)

bunker_57 · Posted: Sat Jul 26, 2008 8:36 pm Post subject: no rolling eyes

cheryl_v , rolling eyes, doubtful looks, irritating questions, get them mostly when I go to a new doctor #Mad

but i just take a page out of the old book and picture them all in their underwear, the high wasted kind. I wrote a poem about lupus and it was published in a poem book, anyway my kids and husband had it made into a plaque in which we keep on our wall at home. For all those who don't understand.
The Big L
You snuck upon me ever so slowly.
Beyond belief my life changed so wholly.
Not knowing who or what to expect,
I searched tor answers and got neglect.
Maybe it was lack of knowledge or people who didn't care,
but life for me just wasn't there.
The lonliness started with the first light of the sun,
hidden away to avoid the gun.
Emotions are high, pain is great,
life has so completely changed since you came through my gate.
The face of lupus comes and goes,
but the effects on our lives will always show.

I entered this into a poetry contest, not so much to win, but to bring awareness to a disease that is really coming to life out there and yet dr and all alike are ignorant to it. Didn't win, but it got published in the poetry book. Anyway I found that I wasn't alone either. The internet is a wonderful thing. Good luck with the ignorant and remember there is a family that does understand and does care. Hope you get some relief. And as far as complaining, you go girl, you have the right. bunker

KathyW1958 · Bear Joined: 12 Jun 2008 Posts: 692

Hi Cheryl,
I am sorry to hear that you are still having the pain in your jaw. I hope that you can get some relief from that and soon. Are you seeing a Rheumatologist? Is the pain in your foot starting like in the arch near towards the heel and up through the top of the foot? I am wondering as this is what happened with my right foot a while back. It was terrible as I could hardly walk on it and yes it felt like it was going to explode. I went to see my Rhuematologist about it and he told me that the tendon in the bottem of my foot was inflamed and he called it Plantars Fasceitis. He gave me a steroid shot into the heel and that really helped a lot.

I like that poem from Bunker, it is so right and on the point.

I hope that you get to feeling better Cheryl.

Hugs,
Kathy
_________________
Lupus for many years. Like most of my life. Sjogrens that started at 35 and Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

Medications:
Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

NoodleMom · Show Poodle Joined: 09 Nov 2007 Posts: 272

aww cheryl i hope you feel better soon. i say that jaw pain has to be the worst. it affects the ear, the mouth, chewing can be difficult...are you able to eat? affects the head with head pain....ooohhhhweee. does ice to it help?
soft gentle hugs sweetie

Kasey

laurid8967 · Posted: Sun Jul 27, 2008 8:08 am Post subject:

Hey Cheryl -
So sorry to hear of your pain...I have only been able to eat soft foods this week as well. I missed three doses of my prednisone and it set things off. The jaw was one of the main things affected - hurts SO MUCH TO CHEW!!! Couldnt do it...pasta and ice cream for me!!
Glad you found some comfort last night. I also use most of yours, but gardening also relaxes me, too. Even if Im just sitting and pruning off dead flowers to make room for new growth. Watching and admiring God's creations can really blow me away sometimes...just taking pleasure in something so simple and pretty.
I love to cook too, but it does cause me alot of pain being on my feet too long. My husband built me a stool to sit on for when my feet get sore. My heels have been bothering me lately...summer shoes, I think. Yesterday, I put on my nice, soft Uggs...with my sundress and hat at the graduation party!! Everyone got a kick out of that!!! I am known as a fashion addict, and that has for sure fallen by the wayside lately!!
Cheryl, did you say that steroids dont work for you at all? Or when they taper them off? Maybe an everyday low dose like I have will help (20mg). It really has done wonders for me. I still have symptoms, for sure, but they are managable most days. Maybe you could ask your doc? Also, about the family not believing you....such a pain in the neck I know. I just bought The Lupus Book - one for me and one for my family to read. They sell T-Shirts online that say "Invisible Diseases Suck!"...maybe some Christmas presents for everyone...lol!!!
I hope you start to feel better...you really need to see your doc, I think...it really sounds like a flare...What meds are you on again?
Talk to you soon...
Love Lauri
_________________
God grant me the serenity to accept the things I cannot change,
The courage to change the things I can,
And the wisdom to know the difference...

cheryl_v · Posted: Sun Jul 27, 2008 6:34 pm Post subject:

.Hello all, thanks for your support and kind words. Brought a smile to my face and made me teary eyed, everyone's so sweet.

Bunker, loved the poem. I'll have to make me a copy for others to read. I wrote one myself a long time ago when my sister was ill, got published too. Lost my copy though. Best writing does seem to come from the emotions of the heart Smile

. Also, I'll have to try your trick with others around me who roll there eyes. Although I'll probably laugh a loud and they'll think the looney-bin is not far for me Laughing

.

Kathy, I did see the rhuemy. He took an x-ray, sending to my doc. The pain is in 3 seperate parts: the heel, the ball (that's the upper under side, right?), and the top. The top pain only penatrates down-wards an inch, not all the way thru. I go barefoot a lot, said I may be losing my arch. I've had the shot, but got immune quickly and wasn't working on the foot or the other joints anymore. Was anything else done for your pain? Does it still cause problems? What do you do for relief? I've had constant pain, 50% sharp, for 3 months now.

Kasey, sorry you have jaw pain too. Ice causes sharp painsto my joints. Am able to eat, soft food mostly. Manage a few other things. I have noticed I've had more headaches recently than usual, jaw probably causing it. Can you eat? What do you do for relief?

Lauri, your jaw too I see. Gardening is something I love to do as well, can't believe I forgot that one Shocked

. I heard someone say: gardening is a step closer to God. Its doing our part to take care of what he gave us. Cooking does hurt my hands and feet, but I get so into it I actually don't notice as much. The steroids I have tried was the shot, after 3rd I got somewhat immune to it. The 6pk, caused my blood sugar to rise. Had to monitor how I ate for almost 2mths. Didn't like that at all. Rhuemy said no steroids right now, I seem to react quickly and strongly to meds. Also, I don't have lupus. I was thinking of getting the book anyways. With FMS and CTD, alot of symptoms are similar. How do you deal with family members being a pain? The meds I have are atenolol for bp and trazodone 25mg (I think) for insomnia and chronic pain.

Today was nice. Mum-in-law called and wanted hubby to do a few things for her. She said she'd take us all out for breakfast first. She was going with some friends who were bringing their grandkids and wanted to do the same. Well I got fed up with the way I was looking and decided to fix it. Put on make-up (hardly wear), wore a dress with a hair in an updo. Actually felt good. It was a buffet bar, so soft food was easy to get. Kids were good, it was nice. Came home and watched a movie with hubby and kids. Then took kids for a walk and made dinner with dessert. Took an extra long shower and feeling pretty good. Had it with the jaw pain though, felt like a screwdriver was jammed in both sides and forgotten to be taken out. So found the pain pills left from having the shingles and took one (thought about it for 2hrs before I decided). The pain is much more bareable now. The weather has been bad all weekend, could account for a lot of the pain.

Well thanks for listening, I seem to have made this quite long. So I will be going for now. Thanks again everyone, you've helped a lonely sad person feel so much better with your kind words and support Very Happy

. Good night.
_________________
Cheryl

To the world you may be one person, but to one person you may be the world. (author: Nick Miller, I believe)

KathyW1958 · Bear Joined: 12 Jun 2008 Posts: 692

Hi Cheryl,
I too still have problems from time to time with the foot. The pain is very much like you describe and I am flat footed, so yes the arch has fallen. I find that I have to use arch supports. You should go to see a Pediatrist fot this. The Rheumatologist also ordered x-rays on my right foot and that did not show much. The Pediatrist told me that it is Plantars Faciatis. The Pediatrist can do a sonic shock treatment for it, which helps some. He told me that there really is not much that they can do other then to stop going barefoot and wear well fitting shoes with arch supports. I find that the shot that my Rheumatologist puts in my heal helps the most. It is not a cortosone shot it is some new medication that he said is the cousin to Cortisone and seems to help more. I hope that I have helped some with this.

Hugs,
Kathy
_________________
Lupus for many years. Like most of my life. Sjogrens that started at 35 and Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

Medications:
Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

cheryl_v · Posted: Mon Jul 28, 2008 5:04 am Post subject:

Hi Kathy, thanks for the info. I'll have to mention it to doc about the shot you mentioned. I'm suppose to wear the arch support in my shoes too. Thing is I work at home running a day-care. Always have shoes off at door, so never wear inside. Maybe I should, and just explain to kids somehow. So, you did have the arch first? Wasn't born flat footed? Did it hurt a lot losing your arch? Could you feel it shifting? Does it cause pain when you wear arch support? Mine does, I really don't like wearing the shoes. Foot so fat, the pressure is extremely tough to deal with. Hope you don't mind the questions. Haven't met someone with the top pain like mine. I handle pain better when I know what to expect. This bad weather here has me limping badly the first 30 min of waking. Has me limping for a few min after only sitting for a few min or so. You've been helpful, thanks. I take it don't expect the x-ray to show much if its due to arthritis? I wasn't sure all what they show. Chat more later Very Happy

.
_________________
Cheryl

To the world you may be one person, but to one person you may be the world. (author: Nick Miller, I believe)

laurid8967 · Posted: Mon Jul 28, 2008 6:29 am Post subject:

Hey Cheryl -
I notice you dont take any anti-inflammatories...I would not FUNCTION without them - even being on pred and plaq...I know you have yet to be Dxd w/lupus, but UCTD is an inflammatory process as well, and they may really help. My regimine is 3 Excedrin in the AM (all excedrin is 1/3 ibuprofen, 1/3 acetaminophen (Tylenol), and 1/3 caffiene). This way I get a little of everything and the caffeine ALWAYS helps!! I take more in the afternoon, and I take 3 Aleve before bed (naprosyn). This keeps my pain under control most of the time. Neither med you are taking are targeting the cause of your pain which is inflammation. I know alot of docs dont like to prescribe pred., but if your inflammation is brought down, your pain will decrease at least somewhat. This way, too, you dont have to go see a doc, this stuff is available OTC. Maybe you could give it a try.
Good for you for taking a pain pill. You and I have had this discussion before -lol- and that is what it is for - true pain!! I hope you find some relief soon...You really are a trooper, girl...
Talk to you soon - praying your jaw pain disappears....
Love Lauri
_________________
God grant me the serenity to accept the things I cannot change,
The courage to change the things I can,
And the wisdom to know the difference...