Dani Henson said...
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
Hiya Dani,
Dani, i am worried about the Ortho appointment i do stress out as i always seem to think the worse,so my anxiety levels sky rocket, i know i need to relax but its a hard thing to do, as i am scared of the unknown and uncertainty. My appointment isnt untill next year, as the Ortho is booked out. And i just dont want to see and tom, dick or Harry . So to see a reputable Ortho i have to wait, which again is difficult, but its definatley worth the wait.
I am assusming my Dr next plan is to increase the Norspan Patch to a 20 miligram, and use Panadine Forte( Codeine for breakthrough. My Dr doesnt believe in break through meds, he said that it was pointless placing me on strong opiade meds if they cannot adequetly relieve the pain, he also said that he wanted to erraticate having to take to many meds.
My Dr stated that the next step would be a stronger opiad if the next miligram patch is not effective.
I would like to hear some thoughts of others in relation to using breakthrough meds in addition to other pain relief meds.
Danni, do you get break through pain? and how do you cope with this? I too do not understand how the spine can go through so much , my spine is also twisting axial rotation, i too get extreme burning shoulder pain to the left and severe upper neck pain, right up into the base of the head, with headaches and when the pain get so bad i feel nauseated, but the dr seems to think this is all attributed to the DDD, tHORASIC sCOLIosis, bONE sPURS ON THE SPINE ETC..Opps sorry about the capslocks.I am going to request additional x-rays on my neck and shoulder, as this to me is and feels like a totally seperate pain. The pain i get in my id to lower back to the right is a completly different pain. I hope he listens and doesnt think i am a hypercondriac... i hope i spelt this right?
Gee Dani, your situation is so complicated, you have been through so much, so many medical issues, your teeth, your eyes etc... i really cannot imagine how you must feel. Your medical conditions with your kidney and heart must be terribly worrying along with all your other severe medical conditions, my heart goes out to you and my blessings and thoughts are with you and your family. When i read this, i said to myself gee.... and i am complaining?
You must have a wonderful support network and family and stong will power to get you through this all, keep soldiering on champ!!! Its amazing how little kids can feel your pain, its so hard at times when we cry in front of our kids due to bad news , pain etc... how are you supposed to explain this to our small children, like you said as soon as Mummy cries they cry, and that is heartbreaking.
I too have been dianosed with clinical Insomnia, and have been prescibed Stillnox- do you have this med in your country?
It is very effective and assists me greatly, i take one before bed and in 1/2 hour lights are out. Otherwise i would be awake till 4 am, i just cannot sleep either. Do you have any meds to assist with your Insomnia?
Sounds like your going to end up at Jemez Springs!
Did you get the email i sent you?
Hope all is well, keep in touch i would love to hear how you are going
Any plans for as you call it Thanks Giving?
Cheers
Leisa-Punchfit x