~ ..quick update

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Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 8/8/2010 2:55 PM (GMT -7)   
 
 
    So... at my appointment with my primary care I was told that they would all be reviewing my case and come to decisions about my care (midd july). To expect to hear back from "them" (all my specialists) in the comming weeks.
 
     I was called and asked to come into the spine center (2 weeks ago). At that time my spine specialist updated my medicine. Set me up to get new exercise progamm. It should be x2s per week for 5 to 7 weeks (which ever my insurance will agree to). I was also told that it is time to "give serious consideration about seeing a surgeon". That we would talk more about it in a few weeks.
 
    I then had an appointment last monday with my endocrinologist. My latest test show me holding strong at 58. I will continue the 50,000D2 per week with IV treatments, as needed, for the rest of my life. I am now considered "controled with treatment" in reguard to my hypoparathyroidism (inherited) and my low parathyroid absorption (0.0025-6). VERY good news.
 
    He then told me that I am considered "stable enough for skeletal correction surgery". Then asked to speak frankly with my husband and I. He think I should wait as long as possible for surgery. He says he is "worried for you. Even though they are considered some what a safe... a surgery of this magnitude will be very hard on you." That "will likly be done in sections". But that "I support the decision you ultimatly make." And that "I was told by the rheumatologist that you have progressed considerably in the last few months and it is putting strain on your body and causing degenerative problems." I was told firmly that if I need anything, anything atall, even just an ear to listen, to call anytime. Then he set up my next few blood draws saying that "We can handle much of your care via the Lab and telephone calls now. I am very pleased with your progress." (He is about 1.5 hours drive away on good traffic days)
 
     I am supposed to have a "sit down" talk with my primary care physician to "discuss your long term outlook and care. To go over your most recent labs and images.". Sometime in the next few weeks. I was also told that "You need new imaging (mri w/ dye), but you can take your time. I know your little ones are still on summer vacation."
 
     Next month I am supposed to "discuss seeing a sugeon" with my spine specialists (both of them)..... At best, beacuse I am termed "adult onset" the damage done is mostly permanant. Correction will only bring me down to 20-30 degree cobb (where I was last fall). I will be in pain the rest of my life. There are long term problems with adult onset corrected curves. The damage in my thoracic and cervicle might force me to hop on the surgery train before I can afford it or am ready, if the damage continues at the same rate.
 
    I have decided that I am going to take a back seat. Continue my ongoing "list of questions" that I will sit down and present them with once all the meetings are over. For now, I will continue to learn and listen to what they all have to say.
 
    ..On a positive note, the updates on my medicine are working really well. Ive been at a level 7 for a little over a week now. The medicine makes me "foggy" no doubt. Though it did ease up some... what I am experiencing right now is as good as it will get with my current "cocktail - combo". I have also enjoyed 4 to 5 hours of sleep per night, only waking 5 to 10 times per night. My mornings are wonderful again.
 
     I realize that my "physical" comfort is only because of meds and will likly be short lived.... but goodness it is so nice to "truly breathe". The foggyness, is at times..... exhausting & silly. But, goodness it is nice to be comfortable.
 
     So, that is what is going on.
 
*hugg*
  dani

 
TWO roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood
 
Chronic Pain Moderator

antbuggey
Veteran Member


Date Joined May 2010
Total Posts : 594
   Posted 8/8/2010 3:16 PM (GMT -7)   
Dear Dani,

I am not sure what to say....some of your post seems like very good news and then there is the other side! It leaves me just lost for words! I think about you often and pray for good things for you! You are such a strong amazing lady....hang in there hun and know that you are thought about and loved!

Hugs,
Beckey
***Spinal Stenosis L3/L4, L4/L5 & L5/S1 with Nerve Impingement***Fibromyalgia***TMJ***GERD***Severe Depression***VERY Large Cyst Right Ovary causing mild twisting, Small Cysts Left Ovary & 3 Large Cysts Uteru****Possible RA***

Medications - MS-Contin, Cymbalta, Famotidine and currently Prednisone

mama6
Regular Member


Date Joined Jul 2010
Total Posts : 416
   Posted 8/8/2010 3:33 PM (GMT -7)   
Dani,
You really have such a great attitude for all that it seems you have to consider at this point. I don't blame you for holding off and getting all the information before you decide if surgery is good now or later. Please know I am thinking of you, and you are in my prayers. Take care & Gentle hugs sent your way. Heather
Big Hugs, Mama6

DX. with Fibromyalgia, Narcolepsy, Poss. RA or Psoratic Arthritis, Herniated disc 3x in last 7 months
Meds: Nuvigl, Cymbalta, Tramadol

Mother to 5 wonderfull kids. Oldest is 18 and just left the nest for animation school. Youngest just started 2nd grade. So I am crazy, and feeling my age plus some.

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2022
   Posted 8/8/2010 4:41 PM (GMT -7)   
Hi Dani
So good to hear from you. I had just sent you an email today.
A "7", wow, that is wonderful for you. I am thrilled that you have had some better days. You certainly deserve them.
I know there are other matters weighing heavily on your mind, but knowing the type of person you are, I am confident that you will get thru it all.
We are here for you all the time, now and forever.

Big hugs for you

SUZANE

>

God has a plan but it will be on his time.
I must be patient and take it one day at a time.

[color=#ff0000>

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 8/8/2010 5:19 PM (GMT -7)   
Hi Dani,

Thanks for the update. To hear that you are getting some relief is a huge blessing... I'm sorry for the "fogginess" but glad you are getting a bit of sleep and that mornings are better. It's so hard to get up and face the day when you haven't slept and feel so miserable. You handle all you are going through w/ such grace... and I admire you tremendously!!

Hugs, Tina
Main Health Issues: Dysautonomia/POTS; CFS/Fibro; Chronic Pain (back issues, migraines, carpal tunnel, among other things); Chronic Hypertension; Hypothyroidism and Hypoadrenalism; Mixed Sleep Apnea (on BiPap); Depression/Anxiety; Vitamin D Deficiency.

MAJOR surprise - Pregnant, w/ twin little girls (after six boys). Due Sept, 2010. Praying they are healthy. YES, you can have chronic pain AND have a successful pregnancy - not easy, but it can be done. :)

MsBunky
Veteran Member


Date Joined Jan 2010
Total Posts : 1097
   Posted 8/8/2010 5:51 PM (GMT -7)   
Hi Dani,

It was good to read your update and see what's happening with you and your present and future care. I have to say right off the bat, I think your doctors should be cloned and sent out to teach pain doctors how to treat people. What a great relationship you have with them...they seem very open and honest and certainly very concerned on your well being and the best ways to help you. What a treat!!

I'm sorry that they have basically told you that no matter what is done, you'll always be in pain. That's a hard thing to hear, but the honesty is refreshing. I think that would make things easier to accept overall, and at least they've told you they will do anything they can to make you comfortable, so that's a good thing.

Dani, I hope that a miracle comes your way, and amazing things happen to lessen your pain and allow you better days and nights. I pray for everyone on these forums for the same thing...relief from the ailments that plague them, or as much peace and pain free moments as possible each day. I hope that your wonderful doctors can come up with a plan that doesn't involve surgery, and that will help you for a long time to come.

Hugs,
Pam
Conditions: Fibromyalgia, Severe Myofascial Pain, Chronic Pelvic Pain (with permanent muscle damage), Femoroacetabular Impingement (CAM and Pincer), Carpal Tunnel Syndrome (both wrists), Reynauds, IBS, Scar Tissue/Adhesions, Ophthalmic Migraines, Severe Hot Flashes (both Surgical Menopause and medication related), plus physically unable to vomit due to the Nissen, and I have extremely tiny veins with a lot of scar tissue...a joy when it comes to having to give blood or get an IV started

Surgeries: Appendix, Uterus, Nissen Fundoplication for GERD, Left Ovary, Gallbladder, Right Ovary, TVT

Medications: Oxycontin, Cesamet, Tramacet, Cymbalta, Flexeril and Clonidine plus Laxaday, Vitamin D and a Multi-Vitamin daily

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 8/8/2010 7:49 PM (GMT -7)   
Hi Dani,

I'm in a lot of pain tonight & reading is hard, so I just skimmed through your post. I hope to read it in more detail tomorrow & type a better reply, but I just want to say that I am so happy to hear that you have at least found some temporary relief! As always you are in my thoughts and prayers. I know I have said it many times before, but I so admire your strength and attitude. You are one strong young lady!!

hugs,
Skeye

Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 8/9/2010 8:09 AM (GMT -7)   
 
 
 
   Thank you all for your words of encouragment. It means a great deal to me to have you all as a part of my life.
 
    I must admit, the "inside me" is very uncertain right now. Everytime I get stuck in the "emotional what if" I stop, count to three and remind myself that I cannot get cought up in that destructive / counter productive cycle. It is important that I "keep my cool".
 
   On a positive note, last night was another 5 hour sleep. I only woke 6 times. By 6am this morning I was stiff and achy. My pain about a level 8.  So I hopped out and bed, took my meds, sat at my heating pad. I am back down to a 6. I am VERY pleased.
 
    *hugg*
       dani
 
TWO roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood
 
Chronic Pain Moderator

antbuggey
Veteran Member


Date Joined May 2010
Total Posts : 594
   Posted 8/9/2010 8:11 AM (GMT -7)   
Dear Sweet Dani....just want to say....

YAY! YAY! YAY!!!
***Spinal Stenosis L3/L4, L4/L5 & L5/S1 with Nerve Impingement***Fibromyalgia***TMJ***GERD***Severe Depression***VERY Large Cyst Right Ovary causing mild twisting, Small Cysts Left Ovary & 3 Large Cysts Uteru****Possible RA***

Medications - MS-Contin, Cymbalta, Famotidine and currently Prednisone

MIKEL99
Veteran Member


Date Joined Feb 2010
Total Posts : 914
   Posted 8/9/2010 10:24 AM (GMT -7)   
Oh Sweet Dani Girl , I hope it all works out well , and its so great your pain is better , regardless of why , and that your sleeping better . I hope it lasts and I hope it improves , you are one in a trillion !!! Love You Lots Mikel
HIV+. meds - epzicom, Kaletra . oxycontin as needed , indothemiacin . hip replacement surgery scheduled for August 23rd !

flower123
Veteran Member


Date Joined Apr 2009
Total Posts : 856
   Posted 8/9/2010 10:28 AM (GMT -7)   
Dani,

I'm happy that your pain is a little bit better. I know that even a little bit better really means so much with chronic pain. I'm praying for you. Thanks so much for the update.

Hugs,

Flower

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13466
   Posted 8/9/2010 10:38 AM (GMT -7)   
Good news in many ways with things sort of stabilizing for you. Glad to hear pai is under better control and you can sleep. That is a big prpblem for me, I sleep in two hour increments. Its good your PCP stands by your decisions that is a sign of a good dr. Like you say you have to keep your cool and not let the what ifs eat you alive. Take care.
 

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.

Mystic_Duck
Regular Member


Date Joined Jun 2009
Total Posts : 52
   Posted 8/9/2010 1:17 PM (GMT -7)   
hey!
First of all im so sorry i havent been keeping up as well as i should be with all your issues but that aside i do remeber where you where last time i talked with you and im so sorry ive missed so much! you are such an amazing person it never fails to mistify me how awesomely calm and accepting you can be in some ways, and i know its much harder but it is so awesome to know you are still so positive! i am so happy that you have gotten awnsers for one and have gotten better in many ways and i know how much even tempory sleep and just hours of some relief can be and im so glad that is going well. it also sounds lik your doctors are all on the same page as you and are so supportive and im so glad you dont have to worry about that! Hope things continue to get better and i wanted to say thank you b/c even reading your posts help me so much because of your attitude!
Katherine
 
"In God's hands, in God's time."
 
"The scourge of life, and death's extreme disgrace, the smoke of hell, that monster called Pain."

Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 8/9/2010 2:33 PM (GMT -7)   
Whew Dani! I had to read your post 4 to 5 times, just to retain a third of it! :) I seriously don't know how in the world you keep up with all of it.
You seem to have an incredible mental medical vocabulary, that is amazing to say the least!

While I cannot understand all of what your going through, I do know that it has to be very tasking on you, both physically and mentally.
One thing that stands out about you, is your effort to be a good mother to the little Bumblebees. Pete sure was impressed with them, when you visited.

Every once in a while we run across a person who seems to be the full package. Doesn't happen too often, but I believe we all here can agree that you
are such a person. Simply amazing!

Another trait that you and I both share is the ability to share and give where you can, even to the point that we might at times sacrifice a piece of ourselves.
There are givers and takers in life, and you are certainly a giver in a very large way.

It is my deepest prayer, that you find the strength, courage, and wisdom as you journey towards some sort of resolve with your issues.
I mean this with tears of Love and compassion that would make an Angel blush! May the Lord bless you in every way, and give you the strength to endure the
trial set before you.

We all here at HW, have been very blessed to have you here guiding and lighting our path along the way.

You are a marvelous little miracle to many of us here.

You're Buddy,

SE
"Respect your fellow human being, treat them fairly, disagree with them honestly, enjoy their friendship, explore your thoughts about one another candidly, work together for a common goal and help one another achieve it."

Post Edited (Screaming Eagle) : 8/9/2010 3:50:45 PM (GMT-6)


Áthas
Regular Member


Date Joined Aug 2010
Total Posts : 55
   Posted 8/9/2010 2:42 PM (GMT -7)   
Gosh, Dani, you seem to be getting so much information. Sounds confusing and I hope you understand more of it than I do. wink
But I find it amazing how you still manage to see positive things. Can't write much now since it's late and I'm still not that well, but want to let you know that I admire your attitude and how you still are positive and encouraging.

Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 8/10/2010 9:38 AM (GMT -7)   

 

    I see I have confused some folks. I am sorry. In re-reading my update I can see why it would be confusing.

    ....it is important, for someone like me, for my doctors to all communicate. So, basically my doctors all had a confrence together (I got the impression it was a teleconfrence). Then I am seeing each one seperatly and they are telling me about 
1. Where my care is at with reguards to what each on is treating.
2. What surgery means from their point of view.

     Once I have seen each one individually, then I got back to my spine specialist and we talk about the starting the process of seeing a surgeon. When I will have to see one, what it means to see one, what to expect and how to go about starting the process.

     I have things spoken to me in a frank nature, then go over the same thing again in simple step by step terms that I can fully comprehend. I don't think they mind. 
 
     My specialists all have same exact information on me, and all have access to the same electronic records. For the simple treatment stuff, they keep in contact via "update letters" that each one sends out to the others. If any of them want more detailed information, then they have access to the same electronic files on me. All of my specialists are all employed by the same hospital (though some in different hospital locations).

     I hope that helped. I am sorry for any confusion, it occured to me from the outside, looking in, it all sounds like a crazy roller coaster. So, I thought perhaps I should explain in detail.

*warm hugg*
   dani


 
TWO roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood
 
Chronic Pain Moderator

damouthy1
Veteran Member


Date Joined Sep 2009
Total Posts : 663
   Posted 8/10/2010 9:50 AM (GMT -7)   
Yep...I am totally confused! lol Just know that even though I only understand about half of what you are dealing with you are always in my thoughts and prayers! Glad to hear that you are at least getting a little more sleep at night, that has to help some. I hope you continue to get some pain relief, that is good news! Take care of yourself and don't over do it...we all love you lots!
Gentle Hugs,
Shannon
 
Fibromyalgia, Chronic daily headaches, Migraine disorder (with and without aura), Graves Disease, GERD, High blood pressure, Depression and Anxiety
Oxycontin, Lopressor, Lexapro, Omeprazole, Valium as needed, Promethazine as needed for nausea from migraines
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