~What a crazy week

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Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 10/31/2009 7:53 PM (GMT -7)   
 
 
   HW Family,
 
      Gosh! It sure has been a long week. I had some happy moments, some sad ones, and some that have left me utterly confused. I don't know quite where to start... 
 
      Monday was intresting to say the least.... Humm, lemme back up to last week. Last week,  I began recieving little checks in the mail. $23 from my pcp. $112 from specialist. $136 from hospital. It was odd, but the weekend had already started and had thought Id figure it out next week. !!Back to Monday!! Monday we recieve mail from the insurance company stating that there had been an error in the processing of my claims. My family covereage is considered "out-of-state" since the insurance carrier is BCBS of AZ & we live in New Mexico. So all claims will be paid at 100% from here on out, but various things would be 90% IE Labs. Whcih explains all the checks.
 
      Had an odd call from my primary care's office. Saying they were sorry but the "new nurse" had "lost" my referral to the disease specialist some how. But! Had managed to get the paperwork faxed over to them and that they would be calling soon to make an appointment. They gave me his name... and my goodness it will be intresting to hear how this fellow pronounces his name..
 
     Tuesday went to the endocronologist. It is hypoparathyroidism. Because it went untreated for so long..  that is why I ended up with some of the more extreme symptoms. He said I would need to have my calcium and phosperous check every few months for the rest of my life. That I would need to keep up with the 200,000 UI Vitamin D per month. My absorption rate is 0.0025 , but, he was happy to announce that I now have a stable calcium level of 60! Up from 14. He said he was sorry for the things already broken and gone, but if we can maintain this level I should be able to effectivly stregthen what is left. Then said I would need to get bone density scans of my hips and spine for various reasons...  Steroids, hight loss, and calcium / bone loss. Then asked if I had made the appointment with disease specialist yett. He would appreciate it is I did this as soon as possible because he needs him to check a few things? (theres quite a little story behind the "new" nurse who "lost" referral...)
 
     Wednesday went to the spine specialist. They sat me down an talked about how the damage has progressed rapidly over the summer months. That there was a "limit" to the amount of steroids that I can recieve per procedure and per year????? They had assessed the areas most in need of steroids and some areas didnt get any injections due to this "limit".... about half my spine got injections this last time. I have gone from 5ft 7in to 5ft 5in in just a few months - originally I was 5ft 8.5in. before any of this happened. So I kinda already knew this news was comming.... My husband told them about the "jerking episodes" in my sleep and I updated on my hipps, hands, neck, tetany, etc... They seemed very pleased with the results from the endocronologist  as this "stable level" "might" give me "some options" in the future. We would discuss more after the results from the bone density scans came back.  Then I was asked to start taking another medicine called tramadol. And, like the amitryptaline, it would have to be increased slowly. But, that it wouldnt take as long as the amitryptaline did (2months).  Apparently this tramadol stuff will only tak a little over a month to get up to the desired dose. I would also keep taking all my other medicines / treatments (nabumetone, etc.) and still keep up with the injections every 3 to 4 months. Then they asked if I had made an appointment with the disease specialist yett.. He should be able to pin point my other problems? kidneys (calcium stolen from bones is different from calcium you eat???), spine (levoscoliosis started almost 1yr before the rapid degeneration did), hearing, sight (lil black spots, not the cataracts), etc.
 
     I want to tell you guys about the crazy new nurse at my PCP office but this post is so long already!!! I have a feeling she will be fired soon......
 
     One other blessing... the medical center here in my little town is almost done. It is only a 10min drive away.  They are still trying to get various types of doctors in, but!!! I can now recieve ALL my tests there. Blood, MRIs, CT, Xray, and apparently the bone scans, you name it! Now I only have to travel for x3 specialists & this new Disease specialist fellow.
 
     I think that is all....  Before I forget HAPPY HALLOWEEN!!!!
 
*huggs*
   dani
 
 
 


 

 

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood

 

 

Post Edited (Dani Henson) : 10/31/2009 10:39:11 PM (GMT-6)


Lindaloo
Veteran Member


Date Joined Sep 2006
Total Posts : 1713
   Posted 10/31/2009 9:07 PM (GMT -7)   
Thanks for sharing your whirlwind week, Dani. You will need a very long nap I think!!!lol.

Hugs and blessings.

Lindaloo
Co-Moderator Chronic Pain and Fibromyalgia Forums
 
Believe in yourself.  Be kind to fellow humans and animals.  Take time to smell the flowers and the coffee.
And by all means, when you are down, ask me for help.  I will be there.
 
Linda


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 10/31/2009 9:35 PM (GMT -7)   
Hi Dani,

First, I want to send you some hugs! (((((((((Dani))))))))).

Boy, it sounds like you've had a very eventful week! That is fantastic news about your insurance coverage (and rebates). Who would think, an insurance company giving you money back! It's also fantastic news that you have part of a diagnosis (although it's not good that you have hypoparathyroidism, of course) & that you can prevent & even possibly improve the damage done by the calcium loss AND that with a stable calcium level, you might now have "some options!" There is hope for you yet! smilewinkgrin But boy, losing 2 inches in only a few months! That is really scary!

I don't know all the details regarding the steroids, but I'm pretty sure that I've heard that, about the maximum amount of steroids your body can handle within a certain time period. Besides reducing inflammation, steroids also influence a lot of other processes within your body. For example, they weaken your immune system. There is probably only so much that you can put into your body before you start causing other problems/damage. I'm sure you could find some more info online, or ask your doctor.

I've never been on tramadol, but like anything else, I've heard good & bad things about from people who have been/are on it. I really hope it gives you some relief! I know that you've been having a really hard time lately! And you deserve nothing less!

Hopefully you'll get in to see that specialist really soon & he'll be able to give you even more answers & treatment options! I know what you mean about not knowing how to pronounce the guy's name! There are some really strange names out there. One doctor that I saw had a french name & I had no idea how to pronounce it. I think I absolutely slaughtered it the first time I said it on the phone when I called his office to schedule an appointment. Fortunately, they knew who I meant!

It's also good to hear about the new medical complex. It sounds really high tech -- MRI's, CT's, x-rays, and a full lab all in one place?! Wow! Fancy! It's like a mini-hospital -- or at least the radiology & pathology departments! I wish we had stuff like that around here! With the exception of blood work & occasionally x-rays, around here you have to go to the hospital to get diagnostic tests done. And what's more, the hospital nearest me doesn't even have an MRI machine. They have a CT scanner, but if you need an MRI you either have to wait for the mobile MRI to come (yes, they have an MRI in a truck which comes once every two weeks or so), or go to another hospital in one of the city's. I remember the first time my orthopedic surgeon (in NYC) sent me to a private MRI facility near the hospital, as I needed an MRI asap & the hospital was booked solid for the day, I was floored! I couldn't believe that they had such things! There's nothing even remotely like that in the small country towns out here! We're actually very lucky that we have a nearby hospital at all! Although I still have travel anywhere from 40 min to 3 hrs to see most of my doctors.

Can't wait to hear this story about the crazy nurse! I'm sending you lots of happy healing vibes, Miss Dani! I hope you were able to have some Halloween fun with the girls tonight!

Many hugs,
Skeye

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 10/31/2009 9:47 PM (GMT -7)   
Dani,

I forgot to ask: how are the teeth doing? Have you had anymore work done, or are you still waiting for the last implants to heal?

hugs,
Skeye

Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 10/31/2009 10:17 PM (GMT -7)   
Hey Danni! I'm headed to bed right now, but just wanted to say hello, and then good night! I will pray for you tonight! Hope you get some good rest, and I will visit with you tomorrow...........now SCRAM! :)

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3611
   Posted 10/31/2009 10:26 PM (GMT -7)   
Dani
I am so glad you started this thread I was wondering how this was going to turn out for you! Well it does look like you have some major pieces to the puzzle solved. It is to bad that it has taken so long to find all this out! But definitely better late than never! I do wish you well and I sure hope they can get you stablized. My gosh Dani you have been through allot! There are some many of you here that have really endured so much! My heart goes out to all of you!

Good Luck to you Dani, may Gods Peace be with You!

White Beard
Moderator Chronic Pain
 
I'm Retired USAF, went back to school and became an RN, and now am on full disalbility!--   DDD, With herniated Disk at T-12 and L4-5. C5-C6 ACDF in  Sep 2009,  C6-C7 ACDF in Mar 1985, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV


Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 10/31/2009 11:26 PM (GMT -7)   
 
   Dear Skeye,
 
 
     In the end, they took them all. When all is safe and sound, hopfully, "retained" lowers and a regular denture on top. I have yet to have any perm teeth, upper or lower. I was supposed to get my lower placed on Monday, but the size was too big and they had to be sent back. The upper I wont get till the top of jaw heals, in about 4 more months. On the plus side, Ive become quite proficent at making soups! Which I am sure will come in handy during winter... provided I am not sick of soup by then.... We drove by one of those "steak House resturants"  the other day and I nearly sold my soul for a steak!   smhair
 
    Now I am really sure I have chatted you to death! Hehe
 
*huggs*
  dani
 
 
 

 

 

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood

 

 


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 11/1/2009 12:32 AM (GMT -7)   
Dani,
Wow! That's what comes out of me after reading your first post! What a week you've had, but it does sound like a productive one. I wonder if our doctors have any clue what it's like to have to run around like you just did from specialist to specialist, and know that it will likely continue. The new medical center sounds like it will really be a blessing for you.

I'm glad you're slowly finding some answers. You maintain such a wonderful attitude in the face of everything you really are an inspiration!

Hope you had a fun Halloween with your bumblebees! It looks like from what I see on the news they had some fun at the White House with trick or treaters, too!

((((((((((((((Dani)))))))))))

PaLady

And yes, I'll also look forward to the story about the nurse....:-)

Screaming Eagle
Forum Moderator


Date Joined Sep 2009
Total Posts : 5005
   Posted 11/1/2009 7:07 AM (GMT -7)   
Danni, you are most welcome to our home anytime for steak! :) I grill an excellent Fillet Minion that you can chew with your tongue! :) It will simply melt in your mouth, and we very seldom have to use a knife on it. So pack your bags and get over here! Be prepared to be treated like the Queen that you are! Thank you so much for checking up on me. I will continue to pray for you as well. Sounds like your little bumblebees had a good Halloween, and it must be a real joy for you.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3459
   Posted 11/1/2009 7:15 AM (GMT -7)   
Dani,
 
You amaze me.  You have been through so much and yet when I have chatted with you, you are so up and bubbley.  You are on and off to take care of your "bumblebees".  You share so much of your wonderful, loving mommy jobs as you do them.  You are truly an inspiration to me.  I am so glad that it seems that things are headed in a good direction.  I know they don't always stay there and that is always a worry but do try to live in the now.  Also know that for you, steroids mght not be a good option with all the calcium problems you have.  I always have a huge dip in calcium after my steroids.  Remember though, I am not a doctor, I am just someone who cares about you and wants you to be healthy.
 
Thank you so much for taking the time to share all you are dealing with.  Hold your blessings close and know you are in my thoughts and prayers.
Gretchen  ~  diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


merrygirl
Veteran Member


Date Joined Jun 2007
Total Posts : 702
   Posted 11/1/2009 12:58 PM (GMT -7)   
Dani, I have been wondering and thinking about you. The same thing has happened to me with my ins. I have reached some catastrophic maximum and now everything is free. I too got a check in the mail. Its nice for a change isnt it?

You sure are having a heck of a time. How are you holding up? kiddos ok?

will say a prayer for you.

take care and hugs,
melissa
Chronic Lyme Disease
Fibromyalgia
Chronic fatigue syndrome
Polycystic Ovarian Syndrome
Sleep Apnea
Hypothyroidism
Adrenal Fatigue
 


uniquelyme
Veteran Member


Date Joined Nov 2008
Total Posts : 1037
   Posted 11/1/2009 8:27 PM (GMT -7)   
 
 
Dani,
I think there was something in the air or the water...because MY week was a mess... but at least it's almost a new week....let's see what this one holds for us...shall we?
 
I think I want nothing too exciting to happen.  I need something peaceful and boring...how about you?
 
No Alien abductions, no unauthorized charges on my cc, nobody needing to stay at my place because their house is being fumigated, nobody needing to be bailed out of jail...you get the jist.
 
Have a great and boring week everybody.....I know I am.
 
Me.

I have been a spectator for so long..Now it's time to participate.......
 
Post Lamenectomy Syndrome, Spinal Stenosis, DDD....
1999 Hemi Lamenectomy/2005 Spinal Fusion(L4-S1)
Methadone 120 mg. a day/  30 mg. Oxycodone as needed(up to 4 x a day)
High Blood Pressure: Lisinopril HCTZ 10 mg. daily
Type 2 Diabetes: (March 16, 2009)
Metformin HCL ER 1000 mg. at night..Glipizide 10mg. 2X in the morning
Lantus 35 units at bedtime with Solostar Pen                                                                   

 


golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 11/1/2009 8:37 PM (GMT -7)   
Hi Dani, I'm so pleased you're finally getting a diagnosis and one with some positives, like no more bone loss!!! Thyroids must be hard to diagnose, my hubby had a 2 year run around before his was diagnosed as underactive. He had these bizarre muscle symptms. A muscle would turn red hot and be agony for him to use, really wierd, it took forever before a specialist finally figured out it was his thyroid. Nothing like you though! You poor old thing you've been put through the mill.
Great to hear you're getting money in the post. I like it when you go to pay for yet another test and discover its free because you've met some criteria.
I've just passed my prescription threshhold. All scripts now only cost $5.20! But it means I've spent over $2000 this year already. Scary stuff!
Hope you survived Halloween, my youngest decided to be a scary clown, quite an easy costume to make for a change. I cut up an old colourful skirt of his sisters and patched his tracksuit pants, with a blue wig and some scary facepaint he was instantly transformed. His sister had a party but at 16 shes old enough to do her own costume. My other son went for a sleepover at a friends so I got off lightly this year. Did your little ones enjoy it?
Big hugs Dani, golitho :-) :-)
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