Help me fight

I posted for the first time about a month or two ago , I am not sure how to include the link of that post to this post but my story is way too long to type out again. I guess I am just feeling down really down. I have been sick in bed for the last month one thing after the other and to be honest rejoining the world is so scary. Luckily my mil was able to stay until today to help with our three children. Does that sound weird or crazy to anyone who suffers from chronic pain, weakened immune, severe depression and PTSD or anyone at all? I know enough about my conditions and self to know I am reaching out for support because unless you have taken a step in our shoes you won't get it and you will be judged. If I am completely honest I never "got it" before it happened to me. The quick summary of my condition is that
I had a emergency thoracotomy ten years ago after a er csection at 36 weeks due to a ruptured splenic artery aneurysm. I went into a full code blue and as a last ditch effort had my chest cracked opened to clamp the aorta to buy time to find the source of the bleeding. I received our 34 units of blood, plasma and cell products.

I also had a distal pancreatectomy and splenectomy. The road to recovery was rough and I fought taking any pain killers for a few years opting for sterold injections, epidurals and a tens unit. We consulted and considered cryro surgery thoracotmy pain and  heat ablation procedure which were ruled out. I was told by the doctors who did my life saving surgeries that they "tore me up" but it did not set in right away. I finally gave into pain medications starting with Oxy 40 mg four times a day, liquid Oxy for break through pain my current regiment is a 100 mg Fentanyl patch changed every 48 hours and Hydromorphone 4 mg and or Actiq 600 mg for break thru pain. As well as wearing a Lidoderm patch over the incision that I change every 12 hours. My thoracotomy and ruptured aneurysm were ten years ago but the pain is with me at every step.

I hate the medications but will concede they have given me some life back. I have also take Welbutrin 300 xl and Xanax? The side effects of the medications are strong drowsiness, confusion, along with nausea severe constipation then colon spams. The severe depression and PTSD from the events I went through are always with me. To complicate things I find myself 22 weeks pregnant last year. To say I was in shock or hysterical was an understatement. The last time I had a baby I had died. The shame and guilt were overwhelming and locally I had no support from my doctors except one. All of the others wanted me to go to GA for a late term abortion. This after I had seen this innocent 21 week baby on a 3D ultrasound he was real. The guilt of the medications I had been on, the risk and worries.........not to mention I was now 40 years old.

Finally at UNC CHill they helped me and guided me. Our son was born 6 weeks early when my placenta abrupted and after a terrifying 911 call, ambulance ride and er csection he was born and was able tocome home after a month in the NICU. I am in a rough patch now. I have been bed bound for five weeks, my insurance company will not cover my pain dr of nine years or pay for any prescriptions he writess anymore due to legal issues his former staff put him in. I have a hard time trusting doctors because one I saw before my current pain dr just had a way of making ou feel embarrassed about these meds. I was and am already embarrassed and would not want anyone to know what I take.

My ltd insurance the Hartford after ten years has been following me and I think they will try to stop paying me. My dr gave me a survelliance tape they sent to him and it makes me so upset to seethe tactics they use. I feel lost, in pain, scared........I have tried to start cutting back on the pain meds on my own just because I won't be able to keep paying for my meds with out insurance covering this dr. I don't know how to find a new dr and am scared too after having the same dr for so long. Any ideas or suggestions  anything? I will be so grateful! I found myself thinking dark thoughts again, the worst thoughts because I am facing so much and feel so weak.

I must find a new pain doctor which I dread, I worry about money because of what the Hartford is doing...........I feel overwhelmed and just needed to get it out sorry if this pity party offends anyone. I know others have it worse but I must face life and I am so scared! I have been surprised about how quickly I regressed it just goes to show these issues are always right below the surface.


...Here is the original link that you introduced yourself. The members can click on it to view it. SE
I also split up your post into paragraphs for easier reading for our members. Please take note and try to do the same in the future.

www.healingwell.com/community/default.aspx?f=16&m=2272395

Post Edited By Moderator (Screaming Eagle) : 1/29/2012 7:48:08 PM (GMT-7)

Please and thank you for your help!

Done!…and your Welcome! SE

Post Edited By Moderator (Screaming Eagle) : 1/29/2012 7:49:40 PM (GMT-7)

Hi....

I read your original post just a moment ago (I guess I must have missed it the first time around) and your newest post. I'm glad you reached out for support.

I can identify w/ many of the things you are talking about... my story would fill about 5 novels, lol... but I also had a surprise pregnancy that I didn't discover until I was about 3 months into it. Because of the extent of my health issues, every doctor wanted me terminate as well - especially when it was determined that I was carrying twins. That it would be my 7th c-section. That I was on a boat-load of medications. And on down the line. But, the end of the story is... I chose to continue on... I got off most of the meds... and, though it was rougher than I can ever explain to anyone - I now have wonderful 16-month old twin daughters.

I, too, have been on many of the same medications that you are currently on...(including fentanyl patches, dilaudid, Actiq and so forth) I can only speak to my own experiences and thoughts - just for me...

It wasn't until I had to lower my meds down for different reasons (we switched insurances.... the surprise pregnancy.... etc)... that I realized what those terribly high doses of narcotics were doing to me -- especially the drowsiness. I thought they were giving me a better quality of life - but, in reality, I spent many days in bed, needed help w/ my kids, was terribly depressed and so forth.

As a side note - I've suffered w/ chronic pain for many, many years and I have no problems at all w/ meds.... I'm still on pain meds, but at a 16th of the doses I used to be on. My pain is still terribly high... but, in other ways, I'm better because I don't have all those side effects that really high levels of narcotics do.

Not only did I have the severe drowsiness as you mention... but, I too had extreme nausea and vomiting - to which I had to take boat-loads of phenergan/zofran.... that went away to, as I decreased my meds.

Anyway, I'm not saying you need to decrease your meds - I just wanted to share my experience - especially because, at one point, I was on almost the same medications and facing exactly what you are going through - having to find a new pain management doctor. At the time, I didn't think I was going to make it....

I saw some horrible doctors along the way.... ones that judged me... treated me terribly... etc. Looking back - what I should have said was "Ummm, how do you think I got on all these meds? It was a "doctor" that put me on them".... but I wasn't as evolved on my CP journey as I am now, lol.

My biggest encouragement is to start looking into PM doctors in your area... and try to get some appointments made ASAP.

I know how overwhelming it feels.... especially when you feel terribly.... I really, really do... But finding a doctor is the first step.

Finally, I would encourage you to keep coming here for support. There are wonderful, compassionate people here.... and, even though we might all share different pain issues or circumstances - we all have the common thread of chronic pain - and all the things that come along w/ that....

--Tina

I agree with SE that Tina gave you great advise, with hopes that this new doctor will
be able to better serve you and give you help....Keep positive about that, you will find a good
Pain management doctor, there is one out there for you...Many many well wishes that your
appointment with a new doctor goes very good for you....

Hello Game,

I agree with straydog, the LTD companies are terrible to work with. I have had many issues with mine, and finally just went for SSDI. If I get approved for that, in my situation they are required to pay part of the payments. Its an odd situation.

You sound depressed, and maybe are suffering a loss of hope as well? I have found that counseling along with depression medications is best for me. I have someone I trust who is understanding of my chronic pain who I can dump every thought out to who will listen and help if they can. I find that writing it down too, and then burning it or tearing it into tiny pieces helps for the things I feel I can't share with anyone.

Finally, I hope that you come back and let us know how you are doing. The support you can get here is amazing. I hope that things begin to look up for you soon.

Mindy

Thank all of you, you help me when I can not talk to anyone other than my psychiatrist who I have seen for eight years and who has saved my life. I also know how informed you all are from our own journeys because at my last appointment I demanded Methadone and am weaning myself down. I know I will have to stay on "some" but agree 110% that decreasing is the best thing to do. I spent the last hour on the phone trying to find a new pain doctor-clinic so I can go in and get a fresh perspective not to mention insurance will pay for it but have found they can not hide their "tone" on the phone I know these doctors get a lot of pill seekers but I am not that. I have run into a wall with many of them telling me the doctors only do injectibles. I went that route for 2 years over my doctors recommendations because I did not want to take narcotics but after 2 years I was told there was nothing else available to try. I am at a loss I do the see the sun today I do think this will force me to seek out another opinion and try new things and wean way down. I also believe that the antidepressant I have been on for 8 years is not as effective and that is not helping. Thank you for your responses, sharing your stories and your advice. I will checknoutthe list you all suggested but can anyone tell me if this is the new norm now? Are pain centers using injectibles and not prescriptions for a variety of reasons and does anyone else know how I find a pain center or a DO who can take a fresh look if that list doesn't work. Anything, btw in the smaller city I live in there is only one pain center and I saw that doctor when I first moved here and we are like oil and water (he is the oil ; ).