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Posted 6/29/2010 4:50 PM (GMT 0)
 

mad        V E N T     mad

     Dear Family,

 

    Who better to vent to than those who know you best? This thread is for getting it all out. For venting. If it goes well I would like to start a "weekly or bi-weekly vent". Most of us are quiet, and emotionally much stronger than those around us. It is one of the side effects of long term chronic pain. It isnt that it DOESNT bother us. On the contrary, it does hurt. Hurts ALOT! But, often times, we keep it all inside.

 

     This is where you can let it out. Once you let it go.. forgive and forget. As best you can. Get it out and take a deep breath. We wont take offense, we understand. So share it with us.

      

Posted 6/29/2010 5:16 PM (GMT 0)
I think its a great idea Dani , and an insightful concept , good job . I'm feeling frustrated about my darn condition ! I finally get a go ahead and now I have to wait 2-4 months . A) to see if the new cocktail meds are effective on my t-cell count . And the very darn day I get my good news , the exam (range of motion ) and the xrays they took have left me so sore I am almost a cripple . I have to use the rolator to go anywhere now . Its terrible I feel like I can't get a break !! . Thanks for letting me get that out !!! Mikel
Posted 6/29/2010 5:43 PM (GMT 0)
Great idea!!! Here goes....my husband and I have this couple who are good friends....sort of family...she was married to my husbands uncle so was and kind of is his aunt but they were divorced and then he passed away....with his brother....they drowned when their boat tipped in freezing water. She is now remarried and my husband really likes her husband and so do I. We spend quite a bit of time with them and I know in they care a lot about us. The problem is she is one of those friends that, I guess you would say, is controlling. It is like she doesn't want me to have any other friends or do anything without her. She is generous, but in almost a weird way. She bought us some summer clothes....3 outfits each....but they are the style that her and her husband wear not like we wear! She tells me how I should fix my hair and even offers to pay the hairdresser. Last night....get this....they gave us a car. Ours is broken down and is too much for us to fix it right now because money is VERY tight for us....to say the least! They have a friend who sells cars and got them a good deal on a new for them, used car. When she bought this car, that she gave us, she had gotten a really good deal on it......so she said she got her money out of it and worries about me getting to the doctor and stuff and they want us to have it. It is a 98 Ford Taurus that is in very good shape. It is an incredible gift but I just don't know how to take it. I am just having a hard time right now with her! She get's mad when I don't feel good and can't spend time with her. She has made comments like, "I finally find a really good friend and she is ALWAYS sick!" I guess I should just accept it for what it is, but it almost makes me uncomfortable when she gives us stuff! First off we can never give gifts that compare and I really do not think that is what she wants, but it makes me feel obligated to do what she wants. For instance, when she gave it to us last night....I had planned on a very short visit.....but ended up staying longer then I wanted and feeling very cruddy because of it! But....I felt like I had to stay! Anyway....I guess we will just see what happens!

Oh and of course.....I hate how I feel right now....need to get to the right doctor to get me started on medicine to give me some of my life back!

Take care all!
Beckey
Posted 6/29/2010 7:53 PM (GMT 0)
 

 

     ...While I was in Florida, a much older woman told me, "I hear you ve got scoliosis. I have scoliosis too." Then she goes on," I have degenative joints and disks. I have a high pain tolerance. So the scoliosis doesnt hurt."  I said,  "It hurts ALOT for me. I am what is termed 'progressive'. Genetic.". She says, "No, scoliosis doesnt hurt. Its a normal part of getting older. Be glad you are still young and enjoy it while it lasts."

      I dont want to hear the age old ~~>

"My imaginary medical expertise is more knowladgable than your experience with a disabling chronic illness" story. rolleyes

 

      Come hang out in no mans land with the rest of us 50+ degree, multiple curvature, primary progressive folks who think genetics is ************.  Where we pray every night that our organ functions arnt being restricted...

 

      The next thing out of her mouth? "You need a new doctor."

 

     ..gee.. lucky you are almost 75yrs old you don't have pain...  Here I am, 30yrs old and having my life slowly stripped away with each degree increase.

     Just for the record, I don't believe for one minute that DDD & DJD doesnt hurt. I call that bluff. People here at healing well have their lives forever changed due to DDD and DJD. Who does she think shes kidding?

 

  mad   mad   mad   mad    mad   mad   smhair    mad   mad   mad   mad   mad   mad

Hobble back to my den now
Posted 6/29/2010 10:10 PM (GMT 0)
Ob boy oh boy, I just hate it sometimes when doctors that don't know any better say let's wait and see....geezee somethings just can't be
a wait and see and need to be taken care of....I hate those words wait and see.....Thanks Dani it felt good to get that out....
I wonder if anyone would take a wait and see with their beloved pets...geezee.................
Posted 6/29/2010 11:02 PM (GMT 0)
I'd love to read these, but the page is too wide. Makes it hard to read. Can we fix it? Thanks! smilewinkgrin
Posted 6/29/2010 11:09 PM (GMT 0)
I am so sick of meds working great and then boom! My neck decides that they won't work any more for it
I am sick of falling all the time. I have more road rash and cuts and bruises then a 6 year old!
I am sick of my neck hurting so bad that walking is impossible and even laying down hurts

I am sick of that "look" from my family and so called friends when I have to take it easy or cancel
I do not want to be a joke anymore. I know I am clumsy and fall a lot. ITS NOT MY FAULT.
If I hear one more person tell me that I am too young to be this broken I will scream and possibly kick them in the ankle!
Posted 6/30/2010 1:15 AM (GMT 0)
I'm sick of doctors! I'm so sick of them treating me like I'm stupid! Espesially the young ones! I went to see a specialist about my ankle in Ocala the other day when I met Linda. This guy looked like he was in high school! He told me everything I already knew and said I need theropy 3 times a week so some one can rub my ankle. I told him I was broke and waiting for SSD and couldn't evan aford the copay for his visit! He said well then just go twice a week. He just didn't have a clue! I have such worse problems than this dumb lump on my tendon that these docs are so worried about, hell if I could aford theropy, I'd go for my messed up depressed head instead of my foot!!!! Theropy = more $$$ for there buddies, hell this guy is probably owner of a theropy place!
I'm sick of drs not understanding the whole picture! Isn't there any Marcus Welby M.D.'s around any more??? Sorry Dani, you probably don't know who he is! Thanks Dani, this is a great idea!!! Your my Angel!!
Hugs>
Pete
PS> I know I was taking a break from posting but I can't, I just miss all Y'all too dam much!!! Love YUZE GIZE!!!
Posted 7/1/2010 12:26 AM (GMT 0)
I like this idea Dani!

I'm attending an RA support group run by the Chronic Pain department of my local hospital. They encourage us to be informed of our diseaase, sort of take control idea. To ask specific questions.

So I visit my specialist rheumy last week and ask, " Is this as goood as I will get on this new med  (Orencia/ Abadacept) or because it is so slow acting , can I expect more improvement?" She just side steps the issue, going off on some tangent, then I say I'm finding it hard to work a whole day now, will I improve? And she offers to write me a letter to my boss. If she doesn't know the answer can't she just say I don't know. I seem to get more frustrated by my visits than feel I have any idea of the progression of this disease or where I will end up with it.

Surely there has to be some sort of statistics out there in the rheumatology world or she wouldn't have tried me on this med!

On a positive note, I have organised more water therapy, starting next week and have booked in to see a psychologist on Friday to help me deal with this current head space. Like Pete I have no money but fortunately qualify for 6 free sessions for both, so I am very lucky. Lets hope the free therapists don't end up being the ones from the sludge at the bottom of the tank!

Best wishes to all, golitho turn

Posted 7/1/2010 6:11 AM (GMT 0)
Dani!! You have the best and freshest ideas. Thanks for starting this.

I wanted to make a comment to Beckey (auntbuggy)...lol love that name! These are just my thoughts and opinions so take if for what it's worth or what you paid for it...lol

I've known someone similar to your gift-giving "aunt". And if it were me I'd be very uncomfortable too, probably to the point of severing the friendship. But that's not what I'm suggesting you do, just that if it were me I would consider it. Giving gifts can be done for so many reasons. Most often they are a tangible sign of love and caring...birthdays, anniversaries, or 'just because'. These people truly love to give and share but they don't expect anything in return. Sharing is just joyous to them. Often these people give and share of their time emensly.

Sometimes gifts are given because the giver feels they 'have to'. You 'have to' get a Christmas gift for the 3 neighbors even though you don't really care for 2 of them; or you 'have to' give a gift to the paper boy because others do. To my way of thinking, if you feel you have to give me a gift then please don't. Save the time and money and just share a word or two. Easier for everyone.

Then there are those like your 'aunt' who give to control. By giving she knows you will feel indebted to her forever! or at least she is hoping so. You described her as controlling about your hairstyle and I was a bit stunned that she bought you and your hubby clothing??!!? IMHO she is buying friendship, she is trying to buy you. Should you accept the gifts? That's up to you and hubby. If it was me I would have to be OK with not feeling in debt to this person if I were to accept the gift. Or if it's not OK then maybe you and/or hubby can ask them to stop giving because you can't reciprocate. I certainly can see accepting things when you are in a tight financial situation. Been there and it's no fun to not know how you're going to feed your kids the next day. There's a huge difference between giving for love and caring and giving to 'own' someone. But bottom line for me is ...I can't be bought.

Just some thoughts...and I'll vent tomorrow when my arms aren't so tired.
Chutz
Posted 7/1/2010 5:20 PM (GMT 0)
Hello Chutz,

Thanks for responding, I have to agree....I do feel like she is giving to control! Not because she expects re-payment, because she is buying our friendship. I do honestly believe that she does truly care about us and I know that she has had a lot of "false" friendships in her past! Her husband is the type to give, just to give because he loves you! It is kind of a difficult situation, I guess. I have made it pretty clear that I won't be bought and still do not jump when she practically begs me to come over. If I do not feel up to it....I am not going! I don't know, like I said....I know she does care a lot about us and I do enjoy her company when I am up to visiting.....but she would be with us ALL the time if she could. Also, she is very opinionated and voices her opinion. I have my opinions, but I also have some tact! As you can tell, I am kind of bothered by this, but I think, down inside, she means well.....we will just have to see what happens! Let her know that we do care about her and want to be her friends....and we do appreciate what she does....but we can not be bought!!! Anyway, thanks again and have a good day! Take care of you!

Hugs,
Beckey
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