Updating my medical condition and prayer needs [Update at #'s 843,721,643,910]

1/17/2014 | trussell

[trussell]

I have faith that the implant is going to help me...when they took the trial away it was like taking candy from a baby...it was cruel! And waiting so long for the permanent one is cruel too. I am praying I am making the right decision in getting this done. It’s a huge step and one that I struggled with at first. I remember the few days I had the temporary unit in my spine, my legs didn’t hurt, I could lay on my sides and they didn’t hurt! My right hip still hurt like crazy and my back was horrible and my stomach hated me from the buzzing, it would make me sick when I ate! But when the tech messed with the unit before it was removed, she got the buzzing out of my tummy and all the way up my back to the middle of my back! It felt so good, I hated when they took it away!!

Went to the doctor on Wednesday...he asked me how long have I been having the increased pain...I told him that I had complained to his Nurse Practitioner for a few months now and that she has told me “He’s not going to give you anything stronger, period”. He said “I’ll have to have a talk with her, I don’t like to see you in the much pain”. He asked if the percocet was working at all anymore and I said not so much...even when I take 2 of them at once. He said “quit taking those, I’m going to give you dilaudid instead, and give you a numbing PATCH to put on your back...leave it on for 12 hours then replace it with another” He wants to see me in 2 weeks to make sure my pain is being manage. I started the dilaudid a few days ago (as soon as I got through the pharmacy drive through) and so far it only helps at night when I take 2 of them with my nerve medicine and my sleeping medicine. I get the idea that the Nurse Practicianer could be losing her job for not talking to the doctor when I said I was in pain and she said I wasn’t getting anything stronger. She didn’t even TALK to the doctor, and I told him she said that and he confirmed that he didn’t know!

Just found out one of the meds the doc wants me on is not covered by my insurance and it is $275 for a one month supply....no way I will be getting that one. :( The medicine the doc wanted me using is a lidocaine patch, 12 hours each patch then replace it. They say since my insurance won’t cover the patch, they will do the cream instead...but I can’t reach my back to rub a cream on and I’m not comfortable asking my teenage son to rub a cream on my nude back (I am really fat). I am on gabapentin for nerve pain. I’m on amitriptiline 50 mg to help me sleep. As for the new medicine...one 2 mg dilaudid doesn’t do it. I take my middle of the night dose at bedtime...so I take 2 at bedtime as well as taking the gabapentin and amitriptiline. I manage to sleep with that cocktail but the rest of the day is still stiff and sore. I’m hoping I can get the patches so I can get some relief! They talk it up like it’s a miracle drug. Maybe I can find out the name of the manufacturer and see if they can help me get them.

Also, my procedure to implant the spinal cord stimulator is set for January 27th...same day surgery, will be home that night. Really look forward to it, though I’m still scared about having the unit in my spine.

Please, keep up the prayers. I appreciate them so much!

[trussell]

Thank you so much. You are right, the last couple years have been really difficult. I wish things would start looking up, it would be nice to not have pain, but the doc said this will never be the case.

[trussell]

That would be “sister”, but thank you for the sentiment! God bless you and thank you so much for the prayers

[EDINVA]

Honestly, I haven’t seen the first sign of “quality control” for your case through this thread. Is there a medical advocate anywhere near you who can fight for you while you work on getting better, living with less pain?

[trussell]

My therapist tries, but she is often ignored or blown off as unknowing of the proper treatment plan. She can only do so much, and often, her exercises for me cause pain, but she feels the traction unit will do amazing things to help my hands at least!

You are right though...they try new things, I feel like I am a guinea pig! I just want to have a pain free day!!!!! That shouldn’t be too difficult. There are meds that can give me a break from the pain. Just help me not feel the pain, even if just one day.

Now I’m crying, I just want to have a “no pain day”

[luvie]

Well that’s depressing...but doctors don’t know everything. I pray that God will take away your pain.

[EDINVA]

I’m so sorry, seems I’ve made you feel worse. But I’d sure like to think you are getting the best treatment available. If you have been diagnosed as “permanently disabled” from the pain and/or injury for two years, you should be eligible for medicare, regardless of your age. That tends to allow you better treatment, more available drugs, etc.

If you are a member of any church, (or even if you’re not) you might want to call a local church office to see if they can connect you to a medical advocate. I’d call every church for miles around until you find someone who can help move the process forward. In the alternative threaten to go to the ER every day that you experience pain.

[Rusty0604]

Prayers up!

[Mr. K]

for someone with your conditions obviously not

but BEFORE you have surgery like that, give it a try. I have NO MORE back problems and I attribute it 100% to using this

[trussell]

It’s sad that they can give relief to a person who is dying of cancer, just something to keep them comfortable until the end comes, yet they can’t give me something to keep me from being in daily pain. I love having life, being here for my kiddos and my friends, I just want to have a day pain-free.

[trussell]

I’m on medicaid right now...not sure what I will be on after I get approved for disability. My doctor was going to put me on morphine, but my insurance wanted prior authorization and this doctor isn’t willing to do the paper-work for that. Instead, they just doubled my dose of dilaudid. It doesn’t do any good...I’m still constantly cramped and in mega-pain.

You didn’t make me feel worse, just the constant pain, I cry alot because of the constant pain.

[trussell]

BEFORE you have surgery like that, give it a try. I have NO MORE back problems and I attribute it 100% to using this ...(inversion table)

I would totally agree! Try THAT before going in for an irreversible surgery!

[GailA]

We are guinea pigs T.

Just 1 look at the meds they put us on will tell you that. You are NOT told about the FDA warnings on the drugs.

Safety update for osteoporosis drugs, bisphosphonates, and atypical fractures

http://www.fda.gov/drugs/drugsafety/drugsafetypodcasts/ucm229800.htm
Information for Healthcare Professionals: Bisphosphonates (marketed as Actonel, Actonel+Ca, Aredia, Boniva, Didronel, Fosamax, Fosamax+D, Reclast, Skelid, and Zometa)

FDA ALERT RECLAST higher risk of Kidney Failure and A Fib.
http://www.natap.org/2011/newsUpdates/090911_03.htm

Foreto warnings
http://medsfacts.com/study-FORTEO-causing-TREMOR.php

Fosamax daily pill
http://www.drugs.com/sfx/fosamax-side-effects.html

Forteo Side Effects epi pen, needs refrigerated
http://www.drugs.com/sfx/forteo-side-effects.html

Evistia daily 60 mg Evista Side Effects
http://www.rxlist.com/evista-side-effects-drug-center.htm

Boniva daily pill
http://www.rxlist.com/boniva-side-effects-drug-center.htm

Prolia 6 month shot
http://www.drugs.com/sfx/prolia-side-effects.html

Reclast 1 yr IV
http://www.rxlist.com/reclast-side-effects-drug-center.htm
not to give it to someone with asthma

http://medsfacts.com/study-RECLAST-causing-TREMOR.php

NOT TO BE GIVEN TO ASTHMA PATIENTS!
Reclast (zoledronic acid) is used to treat Paget’s disease, high blood levels of calcium caused by cancer (hypercalcemia of malignancy, multiple myeloma (a type of bone marrow cancer) or cancer that has spread from elsewhere in the body to the bone, to treat or prevent osteoporosis in postmenopausal women, and to increase bone mass in men with osteoporosis. It is also used to treat or prevent osteoporosis in people who will be taking certain steroid medicines for 12 months or longer. It is in a group of medicines called bisphosphonates. Common side effects include nausea, tiredness, flu-like symptoms (e.g., fever, chills, muscle/joint aches), dizziness, headache, or pain/redness/swelling at the injection site. Most of these side effects occur within 3 days of treatment.

[GailA]

MUST READ BOOKS!
Your Bones: How You Can Prevent Osteoporosis and Have Strong Bones for Life - Naturally Dr Lara Pizzorno 2013
http://www.amazon.com/Your-Bones-Prevent-Osteoporosis-Naturally/dp/160766013X/ref=pd_rhf_cr_p_d_1

The Whole Body Approach to OP
R. Keith McCormick
http://www.amazon.com/The-Whole-Body-Approach-Osteoporosis-Harbinger/dp/1572245956/ref=sr_1_sc_1?ie=UTF8&qid=1398091246&sr=8-1-spell&keywords=The+Whole+Body+Approach+to+OP+R+Keith+McCormick%2C+DC

List of medicines that can cause bone density issues.
Medicines that cause Bone Loss
http://nof.org/articles/6

Nexium
Bone density side effects, and Barret’s Esophagus
http://www.valleyhealthcancercenter.com/Cancer-Services/Barretts-Esophagus - GERD treatment Upper GI every 2 yrs biopsy.

Synthroid
http://www.rxlist.com/synthroid-drug/side-effects-interactions.htm

29 pills that interact with Thyroid
http://www.worstpills.org/public/page.cfm?op_id=420

This is a Brand NEW study.
Cholesterol : Dietary guidelines are wrong on saturated fats, claims cardiovascular researcher
http://www.foodnavigator.com/Science-Nutrition/Dietary-guidelines-are-wrong-on-saturated-fats-claims-cardiovascular-researcher

[trussell]

I don’t have the opportunity to get out to get those books, but I will try to watch for them if I see some used books that are for give-away. Looks like lots of reading material! I am not on some of those that you list...but it’s good to know about stuff ahead of time just in case they try to suggest it, I will have knowledge of it in the beginning. Thank you so much for all of your research that you share with me. I appreciate it so much!

[GailA]

Amazon is the cheapest place to get them, you will not find them elsewhere unless it is a big vit/min whole food super store

[trussell]

Not available at libraries?

[trussell]

Leave it to the government to ruin my special day!!

I was having such a great day for my birthday yesterday. My family and friends were very thorough in wishing me a great day. THEN, the mail runs. 2 letters from the Social Security Administration. I had 2 applications in, one for Supplemental Security income and the other for Basic SSI disability. The letters were my determination letters. They found I am not eligible for disability. I can still work, though not in my current profession. (I have been an office professional since 2002). What is less strenuous or less stressful than an office desk job?

One of my doctors said I would have to be able to raise my legs above my head for several hours of an 8 hour shift. The only job I can think of that would allow that is prostitution and I’m not really built right for that type of job.

I contacted my attorney’s office and they said they would start an immediate appeal. They said the appeal should take 2 to 5 months (the first decision was suppose to come through in 3 to 6 months, and it took 10 months!!) I’m praying that this goes quickly and that I get approved. Prayers from my friends would be so much appreciated. God Bless all!

My surgeon is sending me for another test for my neck and middle back (cervical and thoracic). Since I can’t have MRIs anymore, this is a CTscan with dye injected. The doctor said the dye would be injected into the back and set me up for having it done while sedated. The hospital said the test is done with the dye going through an IV, and I won’t need sedation, but I’m worried I will get there and find out that they were wrong. I can’t do needles to my body (except through an IV).

I am also being referred to a general surgeon...the lump in my abdomen is being called an “encapsulated tumor”, cancer free, but it still causes me troubles by making me throwup when it gets aggravated. They are saying they plan to set me up for surgery to remove it.

That’s all I can think of for now...thank you for continued prayer.

[Rusty0604]

Sorry about the SSA findings but happy belated birthday! Why can’t you do MRIs anymore?

[GeronL]

Good luck

[E.G.C.]

BTTT