quality of life/advise & Norspan patches

   Dear PIPA,

     Good evening *huggs* How are you doing today? Did you have a chance to rest much? I hope so. Things here were very relaxed today. Which is always nice as things can get pretty hecktic here. Weve a very busy household.

     My curve rate was considered "moderate" last year, but have not inquired since my health probles began progressing at a horrifying rate in March 09 (lost 2 more inches off my hight). In fact, at this point, I ask very few questions. It is something I will have to ask at my next appointment with the spine specilist. While I am at it, I should ask to see the lastest X Ray of my spine aswell. It probably isnt healthy that I havent "viewed" my spine since  the bone loss went out of control.

     Yes, I too think it is my age that helps me to adapt so quickly. But I also have a huge list of health problems, that developed in only 7 to 8 months time, that have effectivly overwhelmed me in the last few months aswell. To say that my health is the furthest thing from my mind, would be accurate statement.

      You are correct, even though the area I live in is quite beautiful... it is still "under development" so all of my specialists are literally 1.5hr to 2hrs drive away. I just don't feel comfortable in large cities. But!! on a more positive note, the "medical center" has finally finished being built. Though they are still searching for doctors to come set up their offices, I can now recieve nearly all my medical testing there. The new medical center is about 10-15mins drive from my house. Small blessings. Positive stepps are always welcome   

     Your home town sounds absolutly georgous! From your descriptions I could  almost picture my self there, strolling on the shore line. OOo How increadible it must be!!!

     Yes! Please feel free to contact me via MySpace, FaceBook, Yahoo messenger, mail... anyway that is easiest for you. I would really enjoy chatting with you. !!Before I forget, speaking of chatt.... Every Thursday night we have "Chronic Pain / Fibromyalgia Chat Night". I dont know if that would be too early or late for you, but it starts at 6 PM, Pacific time and 9 PM Eastern US standard time. Maybe you could come join us? Every Thursday Chutz also posts "directions" on how to load the "Healing Well Chat" application aswell. Maybe, if you can, join us. Will be alot of fun.       

     I see this post is getting rather long again!! Yikes!! I hope you have a great day and even better, a day with a little less pain.

*huggs*

   dani

~~~>Punchfit,
I'm not sure if this applies to anyone else, but it's confusing for me to read the responses when the original poster's post is always copied. I don't think there's a rule against it, although some of the posts do get pretty long. I just thought I'd let you know that for me, at least, it's not necessary to do. Most of us are pretty comfortable with just addressing a response to a given name.

Thanks,
PaLady<~~~~

 Post script~  I don't mind the "re posting". For me it is helpful as I have an awfull memory and end up scrolling up and down repeatedly.  It is nice to have everything right there in one post. Either way I don't mind. 

  Hiya Dani,

   I dont find to much time to rest Dani.

I find it difficult for me time, but I did manage to have a afternnoon rest-sleep.

My Husband also spoilt me and booked me into having a deep tissue & relaxation massage and Deep Spring Thermal Spa Bath.

It was just soooooooo wonderful, and really relaxed me soooo much, then toook me out for luch and had Chicken Mango warm salad with a dollop of yogurt and a crusty garlic loaf, what a day!!! . My Husband is just the most wonderful man , and my best friend we have been together since i was 16 years old, and he does so much for me, he is amazing.

I have posted my medical outcome on the last post to babycakes, not good at all oh well what can you do, just have to try and stay positive, but is hard, as im sure you can understand.

It would be interesting to see what is the degree of your spinal curve, and view your x-rays, but sometimes i wonder if seeing terrible progression, effects us in a negative way, in term of our anxieties and increasing fears. But I suppose we really need to see what is going on in our bodies, to be able to take care of ourselves.  Do they know why you have suddenly progressed so badly recently?

How many inches in total have you lost in height? Can you notice this in yourself.

I am sorry to hear that you have multiple health problems that just makes it so much harder, i do hope you can get back on track , and recover from some of these illnesses.

What is the population where you live, i too dont like big Capital Cities, i become to anxoius.

The beach has a calming effect, just walking on the beach at sunset or dusk feeling the gentle water is soothing for me, its also great for the mind,when i am walking on the beach i feel a sensce of tranquility. Great to hear you have a new medical centre that will be great, for the entire family, and im sure they will get in up and running with some quality drs & specialists, as 2 hrs is quite a drive.

 This will make life so much easier in regards to getting all your medical tests and treatments , this must be a great relief.

What is the area-town in new mexico you reside, i dont know to much about New Mexico, i google it via google earth, i think it also sounds tranquil with the snow and mountains- we here in Australia just love snow when it arrives which is very rarely

We have to go to certian snow resorts that take 6 hous to get there, is it cold there at the moment?

Thurday night chat look fun! i will give it a go when i get a chance, and if time permits, no problem there, sounds interesting

i need a good laugh at the moment or i will lose my mind.

Thans Dani i  will drop you a email and go from there.

I to hope you have a special day that is pain free and happy as a bee!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

hugies to you to.

Punchfit- Leisa 

   Dear Leisa,

     Good Morning! *hugg* It is good to hear from you. I hope today proves to be relaxing for you. I know you must be terribly worried about your appointment with the Ortho comming up. I was reading that you doctor would like to continue with the patches along with a break through medication... Do you notice a difference? Or is your pain level still really high? I am sorry you no longer get much rest at night.   It would be really nice if you could get on a pain medicine to help provide you with atleast a little rest. You must be just down right exhausted.

     I know it is hard to read the "findings" report for your spine. They seem like an endless list when they name each vertebre and each disk space. When I do take the time to inquire about my spine I ask for a verbal "generalized summery" from my spine specialist, instead of looking at the report. Probably not the most healthy way to go about it. But last time I read a "finding report" I felt so.. I donno, betrayed somehow?. All the degeneration, disk space narrowing, bone on bone protrustion, rotation....  How can the human spine go through so much? *huggs* I am really sorry that it is all happening to you, but you are oh so brave for facing it all head on. I hope the Ortho can provide you with solutions to help stabalize your spine more.

     I began progressing rapidly when the bone loss went out of control in March 09.  I pray that the bone loss stopps or at the very least, slows down. I wont know if our effeorts have proven fruitful til feburary 2010, as I have many other medical appointments, tests to go though in december and january. The disease specialist, eye surgeon and spine specialist are taking the "front seat" for the next 2 months. I hear if we get the bone loss under control, I "might" have "more options" with treatment. I sure hope that is the case.

      I have undergone 2 eye surgeries to fix minor eye problems (cataract & build up of protein) and I am now loosing vision very rapidly in both eyes due to tiny dots (size of a gnat) and that is under investigation (looks as though I am looking through a screen door). My memory is increadibly unique. My hearing loss is a little out of control and I now have tennitus. My teeth began to crumble out of my mouth (like chalk) in March 09 and were all gone by august 09 (pieces of bone all surgically removed). (calcium absorption rate of 0.0025) My spine is degenerating and rotating on its verticle axis at a rapid rate (levoscoliosis) I am now only 5ft 5in, I used to be nearly 5ft 9in just a 2 years ago. The absorption rate has effected bones in a bad way but mostly the spine, hipps, pelvis and shoulders are always sore and tender.  Hypoparathyroidism, which came with quite a host of problems including ~~>Tingling and burning (paresthesias) in fingertips, toes and lips. Muscle aches and cramps in legs, feet, abdomen and face. Spasms of muscles of the mouth, hands, arms & throat (Tetany). Fatigue, weakness, coarse skin, brittle nails, nervousness, headaches. And because it wasn’t caught right away I was left with somewhat severe complications. My kidneys, heart(arrhythmias) and brain are under investigation right now (I pray nothing serious there). It seems there is much concern over an "elevated white blood cell count" and this silly fever (99 - 100) I have had for over 4 months now(on and off before that for a year total). They tell me I also have insomnia, but I don't stay awake and do things. Just wake many times through the night for no reason atall. I try not to think about it all too much because, well, if Mommy cries, they just cant understand.

     You know? I don't know what our population is.... Come think of it. It has been growing so fast, it boggles my mind. I was telling my husband yesterday that once everything is finally built, I will probably drag him and children further out into the country. I keep telling him I want to move to jemez spring (about 45mind drive from here). He just laffs and says I am "so fussy" and that "he loves me". Ill take that as a green light! hehe And yes we have very fast internet out here thanks to some rather sucessful businesses that have been built. We get a decent amount of snow each year, but nothing compared to our neighboring state colorado. But, Sandia Peak is only a 45min drive from here and is a very nice ski mountain. Not that I have ever ski ed. It more of a spectator sport for me, hehe.

     I see I have once again gone on and on in this reply! I will end it here. I hope you have a slow, and hopefully relaxing day.

*huggs*

   dani

I too hope that the PT helps.

That comment about the Dr being a jackass, i had to laugh!  your spot on, if i dont laugh i will cry.

Plus we dont use that word here in Australaia, so sounded quite funny!!

 i will ask to see a PM, I agree i to feel its going to be the only way to gain decent pain managment.

A question? when you obatin PM does , what should i be expecting? how much pain is relieved . I suppose everyone is different huh.

But can the pain reduce significally. The patches are not working, i see him Tuesday, the breakthough medication Codeine is also not helping, i  have been taking codeine for a long time and have built up a tolerance.

See how i go on Tuesday, i will put the pressure on, im not leaving without plan B.

Thanks for your kind words and ongoing support, my payers are also with you all.

Hope you are feeling ok today.

Keep us posted also in relation to your situation.

Cheers

Leisa x