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Someone please tell me it will be alright

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Posted 4/21/2015 5:04 AM (GMT 0)
I'm having such a hard few days. First, I find out my wonderful Aunt age 59, has stage 4 cancer, inoperable. She is running her own race, not getting chemo and doing the thing she has been doing for years, research and tons of herbs and healthy living.

She has been doing healthy her whole life. She thought she had all kinds of diseases, including fibromyalgia, which my body does have also, but I'm thinking maybe it was cancer sneaking in considering pain is pain. I love her. I'm rooting for her.

I got my MRI today with and without contrast. Since our system has changed I don't see my doctor anymore but a PA. I like her but she doesn't know what the hell she is talking about! She couldn't explain my MRI to me and she used the word "mild" to make me think I'm no different that anyone else. I have a plate hallowing at the screw, bone spurs behind that plate and horrible chronic pain every freaking day! Mild???? Ugh!!!

Maybe she was trying to make me feel better but I know how to read my MRI's after a decade of chronic neck pain and this crap looks freaking scary and I'm worried that my neck is too unstable to carry my head and I'm mad that I can't swing my one year old neice around, and I'm mad I can't work or make my own money and I'm mad that my children have a half functioning mother!!!!

I'm taking Dilauded 8mg up to 4 times a day ( I saw and INTERVENTION episode last night that said Dilauded was a bunch times more powerful than heroin! What????? No wonder I can't think straight but I don't feel high on my meds at all, they just take it down a couple notches so I can walk around my house and put on a happy face for my husband and kids. I'm still in pain! Mild my .....

I'm so frustrated with this never ending process of waking up unrested, brain fog, I lost my keys, I can't think clearly, I say stupid things because my brain is tired from fighting the pain all night and I just want a break from this mess! I'm only 42 years old with a neck of a 65 year old. I'm scared. I'm worried and I'm edit off because I don't know what else to do. Now I have nerve pain at the top of my feet and now in my arms but the MRI didn't say anything about that! I spend all day trying to manage the unmanageable and if I see the repeats of Golden Girls and Frasier ( I can hang with him still) but I'm feeling inadequate and frustrated in this twisted body. I just needed to vent. I smile on the outside and love others like I'm supposed to, but inside I am just a mess and I'm sick of feeling pain everywhere all the time. I just need someone to tell me to hang in there, anything...I feel defeated today.Please pray for me.


I have made some paragraphs in your post to make it easier to read. Some of our members have tracking problems when reading. I have also edited out a word in your post. Please read the forum rules here at Healing Well. Thanks.

Post Edited By Moderator (straydog) : 4/20/2015 11:53:03 PM (GMT-6)

Posted 4/21/2015 6:52 AM (GMT 0)
Hello Jeanette, so very sorry to read the news about your aunt. I lost my mom to lung cancer several years ago & remember all too well the heartache & pain when we learned this news.

As far as your MRI goes, I have read MRI written reports that used the term "mild" when the radiologist read the film. I am not so sure the PA was trying to downplay your situation at all. I noticed you mentioned bone spurs & a lot of times a spur can cause a nerve to become pinched or compressed which will cause a lot pain. Nerve problems do not show up in an MRI, its usually based on certain symptoms. Who ordered this MRI, a PM dr, your surgeon or primary care dr? Once you see the written report you may want to consider consulting with a board certified neurosurgeon to get his opinion of the MRI. Here in the states we usually see PA's or NP's too.

Since you mentioned pain in your feet & arms, has any of your drs recommended trying you on any of the medications used to treat nerve pain? A few of these meds are Gabapentin, Lyrica, Cymbalta, Amitriptiline & Nortriptiline to name a few. Narcotics have little to no effect on nerve pain. We see quite a few have good results with Lyrica & Gabapentin, but both can have some side effwcts that may take up to 2 weeks to resolve. And it can take up to two months to get you at a therapeutic level.

Most of the members here at the forum are on an extended release pain medical with something to take for break through pain. This combination seems to work the best with helping manage their pain. Is there a reason you are not on an extended release pain medication?

Hang in there you have a lot going on right now. Take care.
Posted 4/21/2015 12:54 PM (GMT 0)
Hi Jeanette. Welcome to the forum. Sorry to hear of your difficulties. While the details may be different, we all have chronic pain in common and understand.

I was declared disabled in 2006, at the age of 46. I've been on a small fixed income ever since. While it is true there is a lot I cannot do anymore (they can't fix me) there is still much I can do and/or do differently. I feel the pain of not being able to do things with small children. I have a 5 pound maximum lifting restriction and a 10 pound maximum carry restriction. So much for holding/playing with little ones! Here is the thing though, these children will grow up more compassionate, more understanding of limitations, more respectful of the 'differently abled' than some of their peers. That is an incredible gift we can give them. A wonderful legacy to leave for them. Who knows what their future holds? They may wish to become healers. They themselves may become disabled and use our lessons to their benefit. I refuse to let this pain steal my joy!

I hope you find the answers you need. The show "Intervention" is about drug addicts, not about chronic pain sufferers. The difference, among other things, is we use our medication the right way, for the right reasons. I don't use my meds to get high, I use my meds to get up! lol

Keep coming, keep posting. This is a safe place to let it out!
Posted 4/21/2015 3:26 PM (GMT 0)
Hey Jeanette and WELCOME=)

It's gonna be okay, sweetie.  It has to, doesn't it?  We all need reassurance from time to time.  Sometimes, like pitmom says..."I can't be fixed".  That's me, too.  Believe me, I've tried to no avail.  I was told in late 2013 by 8 specialists in 3 states to seek pain management, because surgical intervention was not possible.  I have suffered with pain since my teens in one form or another. 

In late 2013, after decades of pushing through, trying to be what everyone needed me to be...I thought "for better or FORGET this".  There had to be a way, if not to ease all pain, at least some.  Specialists looked at my records and basically scoffed at me..."probably extensive adhesions from previous surgeries", "arthritis and bone degeneration".  Deal with it.  Seek PM.  How can they see inside me?  Won't pain meds make my GI issues worse?

We make the best of our individual situations.  It's a shame for me that I've been written off as "too old @ 53" and sent away in tears.  I want the source of pain to be removed...not meds to mask the symptoms of the disease.  I've no choice at this point.  I've no medication either.  I've tried several in the past 14 months, with little to no success.  Even my old standby Lortab is irritating my tummy pouch, causing violent nausea/vomiting.  I have vomited until the vessels around my eyes have burst.  Yep...a normal look for me.

It takes a lot of "concealer" to cover my pain. The people in my life don't want to see it or hear about it.  That's okay cause I don't want them to...I keep my issues hidden, as best I can. Only my DH sees the real me.  Even he doesn't know how badly I want this to be over.  I do.  I'm exhausted. I'm nauseas.  Once again, I feel like I tore rib cartilage vomiting last night.

Seek proper diagnosis/treatment protocol from your doctor.  Get a second, third opinion if necessary. If surgery/treament is possible, great!  If not, there are so many modalities to help you cope and LIVE with your pain.  I hope you find answers.  We understand.

~Dixie

Posted 4/21/2015 5:53 PM (GMT 0)
You are not alone. You're with those who truly understand pain and what it does emotionally. To use the word "mild" is so heart breaking. I don't think they understand how much it crushes our self esteem, as if we're making a big deal over something small. I had a PA do the same thing, and I told her there was nothing mild about having numb limbs. Make sure you stand up for yourself. Most doctors don't truly know what it feels like and they have no right to minimize it. I pray that you'll find relief soon. Good luck and have a blessed day. Jake
Posted 4/22/2015 12:08 AM (GMT 0)
Have you actually read the radiologists report ? It may say "mild. You said you have to see a NP. I am assuming that you aren't in the U.S.

Post Edited (Mercy&Grace) : 4/21/2015 8:28:12 PM (GMT-6)

Posted 4/22/2015 1:43 AM (GMT 0)
Is there really NO way you can see a doctor?
Posted 4/22/2015 12:46 PM (GMT 0)
Hey Jeanette.I'm sorry to hear about your Aunt.

I've had 3 MRI's and in the written report there were a lot of "milds" thrown in.It seems most like to downplay these for some reason.

Maybe they think it's a Placebo affect to tell us it's a mild bulge with minimal narrowing.It's not.

As far as the Dilaudid.I think IV it must be similar to Heroin.The junkies seem to think so.

But taken orally,as a Doctor has prescribed,it is a very effective pain medicine,with not too many side effects that I'm aware of.

Take care of yourself.You have to put that #1 at some point.

Take care and God Bless.I'll be Praying for you and your Aunt.Sending positive vibes that way.

Rick

smilewinkgrin
Posted 4/22/2015 12:48 PM (GMT 0)
i send many healing thoughts.
Posted 4/22/2015 11:39 PM (GMT 0)
I'm so sorry to hear about your aunt. I send prayers for peace in the storm, for her and for you.

I think it's fair to say that a PA isn't qualified to 'read' an MRI where I come from. A neurologist has to provide that report to the attending physician. And I get a copy of that report. I might not understand the content of the report, but I can sure do the research so I DO understand it.

PA's can only know what they know. Sometimes the PA steps in when my Primary Physician isn't available--I feel like I'm fetching her up. If I think she's got something 'wrong', I sure feel free to correct her. She's new to my case and new to the practice--she's not going to effectively treat me if she's got it wrong. It's that simple for me.
It's MY body. I live in it. None of us are cut from cookie cutters, even with like ailments we still have differing responses to it, physically and emotionally.

I'm sorry her terms were invalidating and insensitive to the pain you've had to contend with day in and out. I wish that hadn't happened to you. The medications that are required for you to cope in life paint a clear picture that this isn't 'mild' stuff that you're getting to contend with. It just plain 'bites' that the pain is cheating you out of some of the joys with your niece. And not being able to work is a tough on to contend with at any age.

But I want to assure you of a few things. I want you to know that you're already important to that wee thing. She needs the love you have for her--you'll compensate for the things you can't do and those things will make a difference in her life.
I also want you to know that what you think, what you FEEL .... matters. YOU....matter. No diagnosis, no job, no relationship adds to OR distracts FROM your worth and value as a human being (as another child of G-d).

We all have painful moments. You, undoubtedly, just had one. I'm sorry for that. But it's a moment, and it will pass. Things will get different. It won't 'always' be like this.
Just know this--we'll walk through this moment with you.
We already are.

Praying for you and sending you peaceful thoughts.
*hugs*
Posted 4/23/2015 9:27 PM (GMT 0)
Thank you guys soooooo much. When I read these I cried with relief and I appreciate you guys. It is nice to be understood. Straydog, I didn't know it too that long for the neuropathy meds to work so I appreciate that info. I don't take and extended release medication and I'm not sure what to ask for. I'm also relieved about the medicine information and reassurance that I am not a drug addict. I'm glad I have a place to be reassured.
I also appreciated the kind words to comfort me about my niece. When I read how compassionate she will be and more understanding of others because of me, that make me happy. I just have to tell my sister that it is risky to hold her although I want to.I'm so affectionate with children so I have to figure a way how to tell them not to jump on me. I'm happy for the advice on the PA. You are right, she is new to the practice and she doesn't know me yet and I'm sure now that she meant no harm. I see a neurologist in June for the nerve stuff. I am taking 75 mg of Nortriptoline. It didn't work right away but now that I know it takes a while, I will give it some more time.
And thank you for the prayers and peaceful energy. It means so much to me that I have a place to share my distress. And you are right, who I am isn't based on what I can and can't do. Thank you for taking the time to comfort me. Thank you for praying for my aunt. Thank you.
Posted 4/24/2015 1:08 AM (GMT 0)
First, Prayers for your Aunt and if you can maybe see if she would go to a Cancer Treatment Center's as they do offer homeopathic remedies aside with conventional medications...

Maybe check www.drugs.com for information on this new medication, and Straydog/Susie is so great with advise...I agree it could take some time before your body adjust to this medication, however, if it's not helping soon then at your next appointment let your doctor know this.
Lyrica if you've not tried it may help you better, it's not a medication that many can tolerate, but always worth a try to see if it can help...
Don't give up on medications, yet...

Many Prayers and well wishes...
Posted 4/24/2015 1:05 PM (GMT 0)
Jeanette,when I was prescribed Dilaudid for breakthrough pain,I took Opana ER twice a day.Opana is OxyMorphone.It's very effective,especially when paired with the Dilaudid.

If you took an ER med you may not need as much Dilaudid.You'd have to cross that bridge when you get to it though.

Hope you have a relaxing low-pain day.

Rick
Posted 4/24/2015 9:04 PM (GMT 0)
Just wanted you to know you're still being thought of and prayed for. I'm glad we were able to bring you some comfort during this tough moment. Hang in there. We're rooting for you.
Posted 4/24/2015 11:11 PM (GMT 0)
Sitting down with a child and reading a book to them is one of my favorite things to do. Even looking through magazines and pointing out objects. Those seek and find books are great too. Jigsaw puzzles and building with Lego's is another 'sedentary' activity. Coloring in coloring books, drawing, making collages, these are all fun activities. Making flowers out of tissues and pipe cleaners. So many crafts can be done with small children. I'm sure you'll be able to do many fun things that you haven't thought of yet.
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