We have missed you!
Dear White Beard,
Good evening! Thank you so much for your reply. I really appreciate your support. How are you doing? Is the pain in your neck / back somewhat tolerable tonight? I sure hope you are able to find atleast a little comfort tonight.
You had alot of questions, so im gonna try to answer them all Unfortunatly, no, I do not have a diagnosis yet. But they are working hard to find answers. Yes, it is severe bone loss. In less than two years time I have lost much in spine mostly, but have learned in the last 6months that "it" attacks all areas of the body (teeth , etc.) All joint areas are severly inflammed. Which is why my doctors must remain in constant contact and must work effectivly together. Yes, I have many specialists, all very skilled in their respective feilds. Spine specialists, endocronologists, eye surgeon, oral surgeon, etc.... And apparently a few new folks who I will meet this month. Yes, I too dream and hope of effective treatment and diagnosis. I fear I havnt much left to "crumble" to then have "remove". Though my body has decided to age at an extremly rapid rate I assure you my heart knows no bounds and no age! The "mounting / growing" issues with my leggs came on very recently. As did the "severe" bone loss in the other areas of my body (IE: I lost all my teeth in 3 months flat, for example). I found out that the rate was very high, then the next week joined you guys here at healing well in June 2009. I cannot put in to words what a comfort everyone here has been. At times I feel alone and frightened, but, then I come here and well... Im sure know what I am trying to say.
Thank you so much for your kindness and support. It means so much to me.
Hey there! *huggs!* How are you doing? I came across another funny joke the other day. Hopefully I will remember to post it. I missed you too terribly! But after each surgical I have to take those dreaded meds that give me a case of the "lights are on, and noone is home!". Hehe I sure do appreciate the huggs!
Evening! How are you doing these days?? Dont worry about not being around much! I have been scarce myself Oh! You know my bumblebees have mommy talking like a pro now. Youd never know I just had all my teeth removed. Ill have to send a thank you note to Dr. Seuss! Oh, they make my heart smile as always Thank you so much for your prayers and care. It means so much! *warm huggs!!*
Good evening! How are you doing? Are you getting ready for Halloween? My girls are buzzing with excitement! I will have to bugg papa bear to dragg out our decorations soon
You had alot of questions and im gonna try to answer the best I can I have steroids injected to relieve the inflammation in the spine. When it is out of control I have to consume alot of protein because my body burns up so much trying to accomplish seemingly small tasks. Yes, the steroid series are very helpful. I have been tested for many differant auto immune but have not turned up positive. Yes, I can "see". about 4 months ago I had a protein broken up in my right eye, but they knew and expected at the time that the "spots" might increase and would also effect the other eye. They were just waiting for me to "say so". When the protein was broken up out of the right eye, I had 3 very small black spots. Now they are in both eyes. Say 10 or so in right and now 4 in left. Very small. Again, as with everything else, it seems this too, was expected. I feel, at times, that Im the last to know.
Your constant and unwavering support makes me wish more than anything that I could jump through the computer and tell you, in person, how much it means to me. Thank you so much! *warm huggs*
Hi there! I do hope you are relaxing this evening. How are things going with your tooth? .. I probably shouldnt ask since ill hopefully, catch up on the rest of my reading! but *warm huggs* And gosh, thank you for your kind words. I too, believe with all my heart that modern technology will soon provide the breakthoughs needed to effectivly treat someone in my position (dare I dream in my life time?). I do want you to know that though things are still progressing, the "inside me" is doing okay.
I have reasearched ways to package my jewlery and a found trading company that will sell at the "bulk rate" to me for my supplies. I really hope that I will be able to atleast help with the grocers bill at first, small stepps. But feel like really big goals for me. I am excited to be able to truly delve in to selling my jewlery come the new year.
You always have a way of bring a calm despite a hecktic world. Thank you so much for your care and understanding.
Hey There! *huggs* What are you up to? I am enjoying sitting on my #2 I might dip into the valerian root tea soon, its so nice to catch up with all of you.
The injections have brought the stiffness and pressure, with moderate ache, thank goodness! It is nice to breathe The fatigue has loosened its gripp aswell. The oral surgey was doing good, or so I thought... But, since the bone loss continues, there is debate over "plain jane" dentures til the bone loss can be effectivly controlled. Do not worry thou, my husband answered the phone for that one. Good thing to, the moment I heard.... you know I turned to mush and just cried. But! I remain hopeful, and it seems, my bone loss and "other symptoms" are going to be approached with new doctors in the mixx. Perhaps this is a blessing in disguise? So far thou, the jaw is "not showing signs of detioriation yet". *deep breaths* I have not lost hope the bone loss will eventually be controlled.
Thank you ALL so much for your support. It truly makes my heart smile. You ALL seem to make each step of this sometimes frightning journey easier. *warm huggs*
Good morning *huggs* it is good to hear from you. Your replay warmed my heart, I appreciate it so much! How are you doing this morning? Good I hope? I am glad it is morning here, the cold weather has come so suddenly and the evenings are down right chilly.
I was supposed to get "astra mini dental implant system" much cheaper than "regular implants". So, I was / am a bit sad by that.
Much more cost effective.
Well, I was going to try to upload some photos via the hey hubby gallery, but it seems ive lost my login information, again. So, instead, I will open my profile on "My Space" to public view. Just click on the "|pics|" portion under my photo and you should be able to view a few photos I posted over the summer. I think they are on page 2?
The jewlery was originally part of my treatment plan. It was one of the many things / goals I had to accomplish for pain psychologist. (distraction hobbie that isnt "physical") I would have never guessed in a million years that it would make me feel so complete and whole.
Thank you so much for , well, being here. It means so much to me *warm huggs*
I tried to make my profile viewable by the public, it didnt work I dont think. It is, however, allowing me an option to send private link via email. I know that email address are very private, so if you would rather not share that with me, I completly understand.
Good morning Dani,
As usual I am behind on things here at the forum. I was wondering what was happening in your world. I am so glad White Beard asked if you had been given a diagnosis because I had planned to ask the very same question lol. What a an odd thing to happen so suddenly all of this "bone loss" and no one knows why. So, you are a medical mystery to your specialist.
I am still having to limit my sitting at the computer and after seeing the vascular guy I guess its going to be limited permanently. Have they mentioned osteoporosis or anything like that???
My heart goes out to you having all that dental work done, it is so painful I am quite sure. One thing I have not had alot done is teeth being pulled but remember the wisdom teeth being cut out really well. Not a good experience.
Take care and keep us posted when you can, you have alot going on.
Morning! *huggs* Thank youf or stopping by! I am so sorry to hear that your problems are getting so bad. I hope you are able to find a little comfort today. I appreciate your endless amount of knowladge for all things "medical". Everytime I feel confused, there you are. Sharing all the knowladge you have reguarding anything. Thank you so very much.
Yes, when I first met the endocronologist fellow (..4 or 5 months ago?) he sent me all over town for all sorts of tests. The easy "blood" ones were for various "thyroid". Apparently, when my regular specialist, and doctor did these tests they kept comming back extremly low, then months later.. very high, ec. So he wanted those all over again. He also sent me into the city for "in take" test for something called a para thyroid. That wasnt so bad, but took few days out of my schedual. It is silly, but I read about it on the internet at the time, and had hoped that would be the cause, becuase there was a way to "fix". So, when those came back within normal limits, he seemed greatly confused by this. And again, his blood test were opposite end of spectrum, again. I am due to give him more blood monday. The "body" doctors had to slow down and take a back seat, so to speak, so I could get the oral surgery done. Now that the major oral stuff is over, for a little while at any rate, they are back to testing with full force.
The oral surgery wasnt quite so bad. But!! I think that if someone had told me, then, that that time was to be my "physical doctor vacation" so to speak... I would have found a way to enjoy my time a bit better. But!! I was able to complete many jewlery sets and that always makes me feel complete and accomplished.
I want so much to show you how much your care and support means to me. Thank you so very much. *warm huggs*
Yes, my rheumy sent me for the para thoid test the very first time I saw him (expensive test). The lab people are so use to him ordering every lab possible. Should have named him a vampire of some sorts lol. He sends me for labs every 6 weeks because the liver need to be check once again because of the lovely medication I am on lol. Dental work and you are making jewelry, well if nothing else, I am sure it did help get your mind off of things in a way. I, like you, do better if I can keep my myself busy even if I am not feeling very good. Its just best if I am ocuppied doing something. I am trying to come up with a new hobby with winter coming. I become a hermit because my immune system is shot due to various medications. The drs tell me to stay home inside. I use to crochet but cannot use the hands like that anymore, arthritis and carpal tunnel in both, can't hold a dang crotchet needle. I would truly love to start sewing again, its been a few years and I love doing it-but the eye sight is another problem. I cannot see well enough in artifical light and must have natural lighting. So, I am just not sure what i will come uo with lol.
I do hope they can come up with answers soon. Are you on any mega vitamins because of this bone loss? Have they found much arthritis in your joints? Sorry, asking too many questions,lol. Take care.
Good evening *warm huggs* I am very glad you stopped by. How are you doing tonight? Are you able to relax a little? I sure do appreciate hearing from you. I am sitting firmly with warm tea and great company, so I simply couldnt ask for more *huggs*
I hate to hear you have to find a new PM after having to spend so much on the "new specialist" doctors / surgeons. With a new PM, I am sure, will come new fees. THAT you really dont need or deserve. I have such a hard time digesting that medical care is truly a "business". I mean, yes there are those who "help" and yes I understand that they too have bills to pay.... But goodness must we make such huge sacrafices just to survive? I was so nieve to it all just a few years ago...
Though I am glad that they were finally able to attain answers.. !!!To go through so much?!?! You MUST be exhausted, inside and out *warm huggs* I agree with PALady. If there is anyway atall to recover some of the fees, it would be worth a try. Though I do not know how someone would go about doing it.
I did get the friend invite and accepted it. I am very sorry I wasnt able to figure out the privacy settings. Just when I think I know it all... here comes my 8yr old daughter with her "fairy tale power point presentations" to remind me, she really is far more advanced than I am. *sigh* I hear from her "Oooh MOOOOOM! Not like THAT, like this!" "Dont you know ANYTHING about computers?" She sure does make my heart smile
How do these replys end up so long? Good company I think *warm huggs!!*
Good evening *warm huggs* How are you doing today? We are good here, but after a full day of testing I am a little tired.
Thank you so much for your wonderful compliments! It makes me want to work that much harder at it! When I first approached my husband about selling it.. I had thought, perhaps, an out door flea market. But, I dont know what I was thinking! Soon my friends and nurses reminded me that physically, I wouldnt be able to do it that way. Then, another friend, said he was able to sell all sorts of stuff on a web site call Craigs list. I was sure he had lost his noggin, that is where that man on the news stalked his victims. Then!! My husband said he would build me a website or, if I wanted to start small, start an EBay account. But!! I like your idea much better! When I spoke with my friends they all said "Oh! Yea! Con signment shopps can help you sell!" . So, thank you so very much for the idea. I will have to give that some serious research. I really want to contribute, you know, financially. Even if it only helps with the grocery bill, that would suit me just fine. My husband says I do more than he could dream and "Do the jobs of 5 people all in one" but, I think he just says that to make me smile. Reguardless! You guys will be the first to know!
We have a "care center" here too. They are still opening up testing areas, and working out the "kinks" so to speak. So, more often than not, I am sent to the city for specialists. I think your on the right track as far as making sure other people dont have to go through the same heart wrentching process. Maybe an amendment to their policies, or having someone else "over see" / "double check". Initally when I went to our "care center" here a few years ago, someone "miss read" my X ray. It is my understanding they have since changed their policy to include some who "over sees" all X Ray findings, not just a select few. I think you could bring about some very positive changes
Children... I am constantly amazed at the speed that they absorb knowladge. I dont remember being that smart at their age! I was pretty sure my favorite game was "Red Rover" and our amazing feats depended on who could stand on their head the longest!
Here I go chatting away again! *warm huggs*