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cheryl_v
07-26-2008, 01:01 PM
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 :roll: . 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_v
07-26-2008, 02:16 PM
Also forgot to add painful wrist, shoulders and upper arms. Grinding knee caps with sharp pains to boot. What a day :roll: . I sure hope tomorrow's better.

Kimmy
07-26-2008, 03:23 PM
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
07-26-2008, 03:25 PM
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
07-26-2008, 03:44 PM
Thanks Kimmy and Pretti in Pink. I recieved your hugs and ealing power sweet ladies. Got my butterfly net nearby, nabbed it real quick :lol: . 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 :D .

Saysusie
07-26-2008, 07:18 PM
Cheryl;
Thank you for thinking of everyone today :lol: 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 :lol:

Peace and Blessings
Saysusie

cheryl_v
07-26-2008, 09:10 PM
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 :roll: ". 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 :oops: , 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?

bunker_57
07-26-2008, 09:36 PM
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
07-27-2008, 04:46 AM
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

NoodleMom
07-27-2008, 07:28 AM
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
07-27-2008, 09:08 AM
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

cheryl_v
07-27-2008, 07:34 PM
.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 :) . 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 :lol: .

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 :shock: . 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 :D . Good night.

KathyW1958
07-28-2008, 02:04 AM
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

cheryl_v
07-28-2008, 06:04 AM
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 :D .

laurid8967
07-28-2008, 07:29 AM
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

cheryl_v
07-28-2008, 08:05 AM
Hi Lauri, forgot to mention jaw pain is low-medium pain level today. With the pain its been, thats a welcome pain level. The pain pill will always be an issue, I figure as long as I let it then maybe it won't become an issue of getting addicted (I hope). Like I mentioned before, what I've seen saddens and frightens me of what those little pills can do.

I do take tylenol arthritis right now 2x daily, forgot to mention it. I've took anti-flammatories for so long (yrs) that some I was becoming immune to and they were causing my tummy to get ill feel. Taking a break on them and trying to heal the tummy. I've been taking an antacid tablet each morning for a little while. They last all day, so I will probably try again soon.

Thanks for the compliment, but I'm no trooper. I do what we all do, function each day to the best of our abilities. If that does make me a trooper, then so are you and everyone here. Thanks for the reply :D .

mnjodette
07-28-2008, 06:10 PM
Cheryl, it just stinks that you're still dealing with all this. How is the jaw this evening...any better? I sure hope so.

My sister and I both have foot pain and can't go around bare foot without making the pain worse. We are a 'shoes off' house, too. But, I have my 'inside shoes' and my granddaughter (and rest of the family) know that. They are good supportive shoes, and I've never worn them outside - just have them for the house. I'll bet you can make your day care kids understand that.

Hugs, Cheryl. I'm thinking about you....

Jody

cheryl_v
07-29-2008, 06:43 AM
Hi Jody, thanks for the concern. I was thinking of a new pair of shoes, clean soles that have never made it to dirt. I kno I'd have to explain to kids, just makes me feel wishy-washy. I know kids don't always completely understand things. I'm an adult who won't do things unless a kid can, that way they feel equal. Silly I know, love kids and always worried how they feel.

Jaw is a bit better, was able to eat a reasonable dinner. Some soft, some not. Only a little pain afterwards, but not that bad. I know my tummy's happy for the real food :lol: . Been using heat as suggested and light massage on the area. Teeth don't hurt so much, guess jaw was causing that. Also was able to do my walk last night at a good pace, foot wasn't bothering to much so I took advantage of that. It felt great, so told hubby that after kids go to bed I'm going for a walk every night. wether slow or good pace, just me and my mp3 player and no kids. I promised the kids I'll still take them after dinner, just now I'm going to do it by myself. The fresh air and getting out is the one thing my tredmill can't do.

How's everyone's day going? Love to hear from you.