I hope you feel better soon, Tracie.
shingles is so painful. sorry you are going through that
The worst part is that what was bad neuralgia in my right thigh is now CONSTANT nerve severe pain. Also have trigeminal neuralgia due to SS eating my teeth and jawbone...it's worse now too! Life is grand, huh?
it certainly wasn't in my plans. It could be alot worst and on the few days I feel "normal" I so appreciate them.
LOL Stacey, then the public assumes you are a lady of luxury ... Yeah right :)
exactly, Wende Blake. I got tired of explaining my situation. What is worse: nurse friends are the ones asking. Seriously?! Hubby says they are jealous, because they don't want to work. I tell him that I am jealous, because I do. :)
yea and we sit around watching tv and eating bon bons all day. lol
Just want to say thanks again to everyone. You all really helped me to calm down yesterday & gain perspective. It is so nice to have you all in my life!<3
Luba Williams, Which one is you in the Photo ? its Cute....
Oh how Sweet !! ...does that make us close to the same age ? I'll be 45 in a couple of months...
I feel more comfortable in a Dr's office than I do in the mall. How crazy is that?!?
Due to me venturing out tday I'm in bad shape tnite.....price to pay I suppose.....
Same happened to me Thurs night. We went to a wake and I was immediately overwhelmed with a headache and sensory overload. It sucked especially since there were a lot of people I hadn't seen for so long.
Oh man, when my cats were still little, there were 3 kittens and they would run everywhere and hide under everything, so I started just throwing them in my sweatshirt pockets. People wouldn't even notice until a little nose peeked out or they started mewing!
I have all 3 sizes so I will be sure knit the pockets according to size and they will have their names. Endless snuggles :-)
When that day finally comes I will be sure to post it for your viewing pleasure. :-)
I am telling you these things, of course, not as a medical professional but as one who has been through all kinds of h... for many years as a consumer of medical professionals.
Thank you Paul Hartman i appreciate all suggestions. My rhumatolagist suggested kidney stones other week as there was blood and white blood cells in my urine, I have also been getting a throbbing pain going up my back today which i had last time for about a week before the pain got really bad. Every week when i go docs for my weekly blood tests and check up i have my bp taken in both arms, also when i went hospital other week they took it in both arms and put monitor on arm with lowest bp (found this very strange). I am just looking forward to hopefully getting it sorted, if it is the TAK tho i cant see it showing up on a ultra sound as they dont normally use that do they?
Yes, sometimes the ultrasound is used in addition to the MRA (or MRI) to determine TAK.
Aww, thank you, Rebecca. Cameron is just fabulous! We want to thank YOU for being there for your daughter. Any questions you may have please feel free to ask.
Rebecca, Christine is one in a million, she's so helpful and will go to the ends of the earth to get help and support for all of us. xx
We are all quite helpful to one another. The people in this particular room have been so special to me.
well thats nice to hear but sorry not for you. People look at me like I come from mars when I mention my hands and fingers! which country or hospital are you under? how long have you suffered from it?
i'm really sorry to hear that and i live in London but I'm from saudi Arabia ,and I have HSP since January 2010.at the beginning I went to a privet doctor but then he referred me to Chelsea and Westminster hospital .what about u?
I was in Westminster childrens hospital in the 1960's I dont think its there anymore I think its amalgamated with the chelsea and westminster. Not sure! I've heard its still one of the best.
Hi, Cheryl! Don't be scared of the kidney biopsy. I've had two. It's just a little pinch. Spinal taps are way worse. Good luck! :)
So glad that your appointment went so well. It sounds like your new doc is awesome!! Good luck with your biopsy and tests. Keeping you in my prayers and sending you Easter spoons too :) hugs
Thank you Ladies hoping you all have a very beautful and pain free easter :)) hugs :D
significant others do go. It can be very helpful. Not all go, but many. It is truly a learning conference.
My husband went with me last year. It was hard because we had our boys(3 and 4 at the time) with us also and he spent a lot of time keeping them occupied and didnt get as much as I did out of it... but he raves about the conference and wants to go back when he can focus even better and learn more... the conference is a great informational and support for all who are involved with the condition in one way or another.
One of these years I would like to go... I'm saving up to go to a class/workshop overseas this summer, so I won't have the funds.
Also, I find flying very stressful esp since I have to carry meds, CPAP equipment & orthopaedic equipment, plus all my sensitivities require me to wear baggy clothes sunglass, noise cancelling headphones & a hat so that right away makes me look "suspect".
If you do decide to go, give us a full report! Perhaps you can see if others on this list & the main groups are going so you can travel with others!
Get this: I was part of one group, and a very active member formed a new (supposed to be additional) group. One woman who was active on the first board was made an admin of the new board. She started getting really opinionated and all "well this is how I was cured, so therefore it must be what you need."
So the moderator of the first board had to keep deleting a lot of her posts when they were offensive. Other times, she would do the "don't listen to anyone who's responded, here's a link to my page" or post a link to a similar question on the new board.
Then the moderator of board 1 sent me a message (because I was on both boards) saying she was having trouble posting on the new one. So when someone asked a perfectly legitimate question, she sent me a perfectly legitimate link to post for her.
The leader on the second board immediately deleted it and asked me not to post anything for the other woman, and wrote pages of text on what a horrible person she was, why she didn't want her to be a member on the new board, and how all the information she gave was bogus.
I sent a brief message to the other woman after this saying essentially "_____ deleted your post because she didn't feel it was helpful. You may want to talk to her. I think she might looking for something with more research sources."
Immediately I get another 3-page response about how the OTHER woman is always starting fights and getting into bickering matches, telling everyone what they're doing is wrong, blah blah blah.
I actually sat down to take the time to write out a response, which I sent to the both of them. It really just boiled down to "I don't know about you, but I'm sick and stressed out and I don't need this shit." Neither one has messaged me since haha.
good for you Halliday Nelson<3 ... now just breathe
Wow Halliday! That stressed me out just reading it lol.
Maikwe Schaub Ludwig ... looky here <3
unfortunately I feel their is not a lot of compassion out there, I have lost friends over the years who I feel could not understand how BAD I feel sometimes & got tired of me changing plans last minute because I am down & out. Or felt I was a hermit cause I was just to sick & tired. I am lucky to have a loving husband who has never downplayed all I go through.And amazing kids who cherish my good days! I recently read the art of happiness small book packed with good advice. I have learned that losing or" letting" go of toxic friendships, or sometimes even family is so beneficial to your well being. As you are all ready in a fight for your health, letting them go will be the best thing possible for you. Hang on to the people who make you happy & have the compassion for those who do not." For your health & happiness" . After being sick for over 13 years I still have family members who "forget" I am sick!!ugggh!! Life is short & getting better is the main goal, let go of ALL the toxins in your life. :)) Sending healing thoughts your way.
exactly & back atcha Kelly Richardson<3
I hope that your hubby starts to like his job or finds another one soon!! It isn't fun to work in a bad place or with terrible people. Sounds like he is a good guy and is willing to do whatever necessary to help you. :) Hang in there girl and rest well today. XO's
Ƹ̵̡Ӝ̵̨̄Ʒ I hope it sorts itself out with the new hated job! I Miss you Lisa! <3 <3 <3 Ƹ̵̡Ӝ̵̨̄Ʒ
HI! we're doing great, she finally came home on Sunday after 2 mos in the NICU! It's been a tough couple months but she is happy at home and we're all adjusting :)
That's great news! How are you finding having her home? The sleepless nights don't last forever, my little girl is 8 months now and sleeps through! How are you doing healthwise? X
It's hard because she needs bottles in addition to nursing... So pumping PLUS feeding takes a lot of time and confuses her... But she's getting the hang of it now...
ugh, no i haven't experienced anything like that [fingers crossed]...could it be something like an abdominal migraine?... i hope you feel better asap!
I've had many trips to the ER with unexplained abdominal pain, always came up undocumented on films & tests. Doctors decided it was ligament pain. Once I went gluten free though, I haven't had any gi issues. I think it was a combo of the gluten issues and probably ligament problems too. Hope you find an answer. I know how miserable it can be!
I've tried gluten free and got a burning sensation in my mouth that was very painful - only me ! Thnx for all the support :)
I hope the damage is not too severe for your uncle, and much can be done to fix heart blockages.
My uncle responded and shook his head today! He can't talk or anything with all the tubes and stuff. They put him back in a type of coma to help him relax and recover
Wow, good news and kinda scary news too...how old is he JJ?
Laura, what website have you found, I would like to take a look at it.
I'm a student as well and frankly I hate using the medical databases. I feel I understand my disease very well, and reading those databases I'm either very confused or even correcting them!
I give them mixed reviews as well. They are studies, and not necessarily in synch with what each of us are dealing with. I'm starving for any information and weed out a lot that doesn't pertain to us. I'm hoping the conference will be positive.
Lots of spoons for you...or you can just repeat after me and adopt the motto "forget about it" =) You need a housekeeper and a hot lawn boy. When you are done with them, send them to me. My house, yard and garden are still waiting to be taken care of. LOL...It will be there later is what I say, and trust me they don't take care of themselves. unfortunately! :) Good luck today! I hope that you find time to rest and don't overdo it. (((lupie sister hugs))))
Ah, yes, a hot lawn boy! Thats the ticket!
fist bump Kathy Roeder =)
thanks all, just call me Miss Sunshine...ugh NOT. I know you all can relate to "one of those days" and this is it. Thank goodness I am retired. Am putting on a smile and the rest will follow. It is going to be a beautfiul day in Calif.
So sorry Melanie; have you tried the soap remedy for charley horses and cramps? My mom's home remedy and I just learned another ss's remedy! Put a bar of soap under the cramp when you get it, it gets rid of my pain almost instantly. This other person uses it for restless leg syndrome too. Sorry you had a bad night, hope your doing alright now.
Thanks Karen, I used to use the soap for restless leg syndrome. It was a miracle. I have 4 chihuahuas who burrow under the blankets and didn't want them to inhale. However, I am going to use the soap and see if it helps with the cramps. Too bad dogs. Actually maybe it will help my old dog...lol
thanks for input and questions everyone. if you think of more or what you think this pastor should talk to the youth group about regarding pain --emotional and physical-- and everything....chime in.
one thing i wanted to share with people above... is.. that in the past year i have gone through a process where every time i asked for someone to help a loved one sick with lyme.. where i knew it was life or death.. and i made the most impassioned plea ou can imagine... i knew it was a test for their progress in this existence.. it as similar to when i was at columbine and knew that those kids had sacrificed themselves for people to make choices...to learn from it...this is i think why it hit so many around the world...i could go into great detail from a spiritual perspective- but...you can feel that agonizing wait when something is out there as a result of a situation.. and the wait is for people to make the right choices...or not...and you can see the consequence.. and its agonizing...but you can feel also the magnitude of their decision.. its almost like one of dooming the person who needed them to make the right decision.. and you can feel it is a taint on their own progress....if that makes sense.. and its like a huge interconnected interwoven process.. while we think we are just here sometimes suffering healthwise... we can be the catalyst for someone else and surely are.. to choose the right.. or not...it can be as powerful as you can FEEL that you will be standing in front of Christ with this person at some point.. and they will be asked.. why didn't you choose the right and help this person.. and they will have to answer and learn from it...the well done faithful servant.. is for the struggles too wher e we are the catalyst .. the lesson.. for the other person's opportunity. to learn.. to choose the right.. to progress forward.. when we dont understand why we suffer? look around... the person suffering and see those who are supposed to learn from it... often its very few...who actually learn.. or get it.. if any.. but its repeated until they do...does that make sense to people? i know how it feels and understand it but sometimes its not easy to put into words..
sorry so long ( i wish we could separate in paragraphs as we type..)
Hugs to you and your family. So much to deal with in such a short amount of time. Prayers and blessings to you and a your family.
May the Lord help your husband and you cope with this end of a friend's physical vessel and know that he is still there, just in his spiritual body, finally free from pain.
Jill, so much in short time span. The body feels all the stress, take good care. I'm so sorry about your hubby's friend.
WOW you certainly have alot going on!! Glad you can share your experiences with us, and we will always be here if you need us, rant away and try and de-stress. Take care of yourself xx
thankyou <3 have you seen the 2 pics ive just put up?? jenson at 6mths old and last week with his sister, i think hes gonna be a 6ft guy, and thats why we are strugglin now as he looks about 12- 13 but only has the mental age of a 7-8yr old...bless him he is my BFG lol xxx
We all have so much to cope with and sometimes it just overwhelms us. Yesterday was one of those days, my son has behaviour issues aswell as everything else and we has a 3hr screaming tantrum where he managed to scare the life out of his sisters all of which have spd, they are extra sensitive anyway, he also managed to dislocate both my shoulders and my elbow, and Sublux my wrists and knees. He's 6! I was in so much pain and so fed up with all these tantrums everyday and getting hurt and last night it was until 9:30 so my little one was exhausted coz she couldn't go to bed till he had finished. big hugs to everyone who is struggling atm and needs one x
Thanks :) I guess I will make sure to carry 2 epi pens at all times, maybe 4, I seem to have more Lymie friends now, lol.
I have to stay away from penicillin myself. Horrible rash allover my body, throat swells, and I stop breathing.
I agree about herxing.....through the past 3 years I had rashes after abx...... I added to allergy list but now I really think it was due to lyme and herxing
My eyes have crossed randomly a few times lately
I'm worried about neurological problems with lyme...that it could cause something like this.....I will have To see my neurol. I'm guessing.....thank u luba and chelsea for sharing. I was just to see him three weeks ago too but of course this problem didn't strt till about ten days ago...figures right? Lol
best sleep i ever have
One thing you want to do is to keep a log and try to understand WHAT was controlling the pain and the monster, then work with the Drs to try to figure out something with less side effects that can do the same thing to get YOUR monster controlled. Since all treatments are an experiment, you now have a good starting point to try to figure out what works for YOU!!!!! Good luck playing white rat and hope you are able to get through the maze!
Thanks for the comments! Gayle, that's interesting that it affects you the same way. Wayne, that's a really good idea, I will start doing that.
Hey Kendra Cuyler, thanks for replying. I have had my adrenals tested yep, and was told my adrenals are a mess but not sure if I was properly treated for it? Maybe I am I am on so much stuff. It did show high levels of cortisol, high testosterone and a couple other thins were all wacked out. Has anything helped you? Curious what your doctor says about all this? And what triggers these episodes...
physical or emotional stress & illness can trigger adrenal insufficiency. I've been on replacement dose of oral hydrocortisone for 20+ years (20-40 mg daily - all at once, or dividied. It would be good to take as much Vit C as you can, the adrenals use a lot of Vitamin C!
This has been one of my herx symptoms. I get hot all over, everything gets bright, but sound gets muffled, then I feel like I'm buzzing or have electricity coursing through me. I shake all over, and sometimes it leads to the partial seizures. Completely conscious and aware, can speak, but my body is convulsing. Learned to just sit and relax through it. Can't stop, might as well ride it out. When I'm at work we just keep talking and going about our normal business:)
I nursed both my kids ...i covered up...but sometimes the blanket would fall...I didn't give a rat ass if someone looked...if they stared I usually stared back at them
Ƹ̵̡Ӝ̵̨̄Ʒ For the short time I breastfed I covered myself. Out of respect for everyone, including myself. In your own home, it is mostly family, and I still covered unless my Mama came over or husband was there.. Everyone else didn't get a peek! LOLOL I just find people rallying to be able to expose themselves in public is a bit silly.. Just feed your baby and don't make a show of it! That is a Mama-Baby time, not to be shares purposely with strangers. Ƹ̵̡Ӝ̵̨̄Ʒ
Ƹ̵̡Ӝ̵̨̄Ʒ shared* Ƹ̵̡Ӝ̵̨̄Ʒ
Lesley I love that one but not the one.
So far this morning I've done well.
I haven't gossiped, I haven't lost my temper, I haven't been greedy, grumpy, nasty, selfish, or overindulgent. I'm very thankful for that. But in a few minutes, Lord, I am going to get out of bed, and from then on I'm probably going to need a lot more help.
Guy, is this it, lol? Have a nice day!