Rhaevin's Return

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Rhaevin
Regular Member


Date Joined Jan 2011
Total Posts : 230
   Posted 1/4/2012 12:51 PM (GMT -6)   
I want to start by saying I'm sorry. I let my depression get a strangle hold on me. Even with my meds I couldn't figure out why I was getting up anymore. I still can't. The local shrink and I don't get along, as I get tired of getting insulted and feeling like I'm not being heard or understood. My mother has expressed her concern about my lack of motivation, that I need to get back here if only to vent and to remember that somewhere out there someone does care.... even if it doesn't feel like it.
 
So the swelling has finally all gone down, and I've recovered all my mobility in my neck. It still gives me grief, and I've yet to find a pillow that works for me. I'm lucky to get six hours of sleep at night. Most of the time I can't fall asleep, knowing the pain will eventually wake me and I'll feel stiff and sore; that half hour till my meds kick in is horrible. I can't sleep with my stim unit on now. To have it down low enough so it doesn't bother me is silly, so I turn it off instead. I know it doesn't help how I feel in the morning, but I can't sleep with it on.
 
My rep has felt like she's been banging her head against a brick wall and that she's failed me. She had a tech come out from the company. They spent almost two hours with me, trying to get my programming so that it was only my neck and arms affected, but they couldn't get it out of my waist, my pelvis, my legs, my feet, or my toes. I tingle from the waist down, infact frequently it feels like that's stronger there then in my arms and neck. Every time they'd start getting it out of my legs I'd feel it receeding at the same time from my arms. It's also directional, meaning that certain poses make it stronger or less. I'm not figiting, I'm either trying to get better coverage in one spot, or trying to lessen things. I also now have to turn myself off to brush my teeth as well as write. Yes, it's up so strong I look like I'm still twitching from the electric chair, or that I've got real bad CP. I'm getting used to the stares mainly because I don't go anywhere without Bear now. Bear is almost 7 months old, he's a little Shih Tzu/Lhasa mix, I jokingly call him my dragon given his love of piling all his toys on his bed and then curling up on top of them. Bear has his little official vest, and I've armed myself to the teeth with both state and feral laws regarding service animals. Bear is being trained as a retrival dog, and so far he's 100% profiecent with retriving my dropped medication bottles. Yah I drop things more often, some days worse then others.
 
Christmas was hard. My son asked for a Dad, and it tore my heart in half to tell him that was the one thing I couldn't give him. He got lego's for Christmas and wanted me to build them. I had to turn myself off to get my hands to work on that small detail, and I was in pure agony the rest of the day. I've had to give up almost all my projects, mainly because to do most of them I have to turn myself off, which rips away what little buffer my stim offers. Yes, I've asked myself more then once: was it worth it? I don't know. See after the tech spent almost two hours they couldn't get it out of my legs. The only explination they had was it's the leads. I've got the paddle leads because you can anchor them in place, and with cervical patients that's a big must otherwise the migration issues are massive. However the paddle leads focus and concentrate the electrical current, meaning it's focusing it right down my spinal colum.
 
My son turned 9 today. His only wish that there was a way for me to be cured.. to get better. I told him that is a lovely wish, but I fear it wasn't going to happen. He's watched me get worse. Before Christmas I had to sew a costume for him for his school and my CRPS flared up in my left arm big time. That's right, it's no longer in just my right arm. It's dominating my right arm, a bit into scapula and neck, and into my left arm, especially my elbow and wrist. What this means is that I'm in serious agony just typing this. That's part of the reason I've been gone; it hurts just to bloody much to type to everyone. That's also why I've basically stopped sending emails. It hurts to much. I'm still on my oxycodone and muscle relaxant, as well as anti-depressants. I've got a new primary care doc, as I changed insurance recently. I'm also in the process of finding a new pain doc.
 
I know I worshiped Mohajer for so long; heck he's the reason I have my diagnosis and my permanent disability. However since my implant we've not seen eye to eye, and even my mother has become angery with him. It's like he's in denial that my implant didn't work the way it was supposed to. It was suposed to give me back so much of my life, and instead it took more of it away. I had to sell Tanis; I couldn't afford to keep him, especially since I knew there was no way I was getting back in the saddle again. At least not with him. Not sure I'll ever be able to afford a horse again, the hay market is in the pits, but if I did I'd haver to find a serious bomb proof babysitter. Makes me miss Sierra all that much more; my grey lady would have taken the uttmost care of me.
 
But so Mohajer has been wanting me to decrease my meds. He can't understand why my implant isn't working right, after all I didn't have this issue with my trial. Instead I have to cock my lead to the far left to keep the pain out of my arm as much as possible so I can type. Talking about looking at the world with a slanted view. The last time I saw Mohajer I broke down in a fury in his lobby. I'd been told the week prior that there was no record of my phone call requestion a script refill, and that with the holiday they wouldn't be in on Monday as normal, but Wednesday instead. Never mind my script ran out on Monday. There was nothing they would do for me. Basically it was drive the hour to pick it up in Vegas, or wait till Wednesday. I didn'thave the gas money. They wouldn't fax it, over night it, or courier service it to the doctor's office. As far as they were concerned I was SOL. When I went in on Wednesday I was trying to get my script rewritten the way my new PCP wrote it (double my dose, not that I was taking it at double. It was 1-2 evry 6 hours, instead of only 1 every 6) but they wouldn't, but they were willing to squeeze me in so I could see him. I said sure, so long as they had my referal on file since I can't see him without one now. So they come back out and tell me they don't have it. That's when I lost it. I started bawling my eyes out: "First you tell me you don't have record of me calling in for my refilll, now you're telling me you don't have my referal, both of which were done 3 weeks ago! All I want is my pain meds refilled!" The head nurse moved me to a private room wher I could fall apart quietly so I'd stop disturbing the office. I called my Mom, who showed up after I told her what was going on. She's sititng with me in the room, trying to find out what's going on, the head nurse is trying to put a rush on my referal so I can see the doc, and in the mean time Mohajer flings open my door, sticks his head in and angrily snaps at me, "You ever disturb my office like that again and I'll refuse to treat you! Do you understand?!" Well I'd been in the middle of osmething so I hadn't heard everything he said, so I said, "no" "What don't you understand?!" "I didn't hear you properly." So he repeats himself and adds, "And you went and saw another doctor, and you're taking to much medication!" I tried to squeak in "I had to see the other doctor, I changed insurance. And if you read the bottle to see the date the script was filled you'd realized I made a two week (at max dose) script last over three weeks. Yes, I'm taking 5 a day instead of 4, sometimes 6. (I have a feeling after all this typing it'll be one of those days) However he wouldn't let me get a word in, and swept out, slamming the door, as fast as he'd swept in. Mom and I agreed: that was a doctor throwing a temper tantrum, felt he'd had his toes stepped on, and that I'd gone behind his back. Well for starters I don't have a drug contract with him, so yes, I can see whom ever I want, but the only reason my PCP had written my script was because I got in to see him the same time I needed my script refilled, and I wasn't going ot have a referal in time from Mohajer... it was a good thing too given they didn't get my phone message. Without that script from my new doc I would have been SOL.... again (it wouldn't have been the first time). I'm so tired of fighting with Mohajer, of him not hearing me, of him not believing me.
 
Now that I've rambled.... in a nutshell: I don't know why I get out of bed anymore. I'm a ghost of who I was, living with ghosts of my past life. I can't knit, do needle point, create things, ride... I can't play video games with my kid, hell I can't even really corrispond with anyone via email anymore. I've stopped answering my phone.... I'm tired of reading about how happy my friends are, their successful lives, their trips, etc. I started going to the gym for awhile, but then stopped. I need to get back there as I've gotten out of shape, and before I need to go up a size I need to get it back under control. I feel like a failure for my son. I feel like I don't belong. I feel like I'm not wanted, that I'm a burden. I know I'm not wanted. I tried an online dating site... yah, fat lot of good that did. This time last year I had so many hopes and was so optimistic about my future. These days I wonder what will start to hurt next; both my arms give me grief, what's next? I'm not suicidal, I guess that's something. I hate the town where I live, there's nothing to do out here, not that I leave the house anyway. I leave only to take my son to school, go to the doctor's, or go to the store to buy needed items. That's it.
 
So I'm not sure if I'll be back anytime soon, even to read, but I know side from Loretta reading the ocassional post on my FB page I haven't talked to anyone in a long time. Mindy, Laura, Loretta... I love the three of you so much; I really wish we all lived in the same town so we could get together, hugs, tea... even maybe to find a reason to laugh and share a few. But I need to go now. My stim's on, but it's not really making a dent in the pain in my arms or hands. I'm going to pay for this, but I just wanted you to know that I'm still here, that while I know I'm not alone it sure feels like. And yes, I finally learned to cry in public. I always hated the notion of appearing weak, but now it's more tears of frustration and hopelessness, and if it helps people to understand the hell I live with day in and day out maybe someone, just some "Norm" will understand better what people with chronic pain suffer with.
 
I will always be forever greatful for all my friends here, for all the emotional support and love that was shown to a total stranger.... to this broken and hurting single mother..... cry
 
--Kristi
Originally injured 10/26/2007 - Initial diagnosis; Tendonitis
Have seen several specialists; Bone, Muscle, Hand, Neurologist, Chriopractor, Physical Therapist...
Went through a battery of tests, multiple MRI's
11/16/09 finally diagnosed CRPS - Stage 2
Permanently disabled, on Oxycodone, Celexa and Zaniflex.
February 2011 successful SCSU trial
May 2011 SCSU implanted

Monty's Mom
Veteran Member


Date Joined Aug 2010
Total Posts : 664
   Posted 1/4/2012 2:19 PM (GMT -6)   
I have missed you my friend!

I am sending you hugs. I hope you can feel them. I think of you often, and had prayed that you were ok. I understand why you can't email or type, but that doesn't mean I don't still think of you.

Glad you gave an update... sure do miss you, even when you are down.

Grab your wrap and get a hug from me. I am using mine today! Love you too Kristi.

Mindy

bayoub2
Veteran Member


Date Joined Sep 2006
Total Posts : 2861
   Posted 1/4/2012 2:23 PM (GMT -6)   
hi Kristi

We don't know each other and my condition is not nearly as serious as yours but I just wanted you to know I read your post and I am so sorry your life has become what it has..

I cannot even ofer any wisdom or advice, but I suffer thru the ignorance of "medical professionals" who supposedly are helping us, only to make matters worse. i understand being a disappointment to your child-not in their eyes (my daughter just wrote me a letter telling ME how lucky she was to have me-OMG!!) but inour own. I understand the frustration at NOmrals" who look at you as if you are just being melodramatic and it can't be "that bad".... I get it, I really do

So, altho I know you feel veryisolated as I do from the life we once had, you are not alone i n that place...you have alot of company...I hope it does not cause you pain to read this

Take care and even if you cannot write, I will be thinking of you

Maggie
"We never realize how strong we are, until being strong is the only thing left"
Major Depressive Disorder, ptsd, fibromyalgia, chronic pain, l3/4, L4/5 gone, bursitis arthritis sciatica

cymbalta seroquel hydrocodone klonopin magnesium potassium

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted 1/4/2012 3:14 PM (GMT -6)   
Oh Kristi, my dear, dear friend :(

How I've missed you, and how sorry I am for what you've been through. I love you too - and don't have to say sorry.

Laura
Moderator - Chronic Pain Forum

Full body CRPS with spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bursitis, CTS, osteoporosis, multiple compression fx, disc bulges.

Oxycodone ER/IR, Topamax, Mobic, Somac, Cipramil, Midodrine, Vit D & C, SCS, baclofen/bupivacaine pump

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2024
   Posted 1/4/2012 3:53 PM (GMT -6)   
Dear Rhaevin, gosh when i saw your name i was so excited to see you but it pains me greatly too how much you have and are suffering. I wish I could make it all better for you, even just a tiny bit better. Know that i am here for you in any way you need me.
I know you don't feel like you've been a good mother but honestly I bet that little boy of yours would not want to be one day without you.
I'm sorry for all the problems you had with your doctor and i wish you much luck in finding a new pain dr.
yes I read every word of your post. And maybe I'm selfish for saying this, but i sure hope you do come back to post. Even if it is only a sentence or. We all miss you here and we can help you get thru each day. Please consider it.
Michael has started a facebook page for us cp sufferers and we have a great time there. Laura is there, Mindy, myself, michael, and a few others. I would love it if you could join us.
You are in my prayers Kristi. Please hang in there.

Suzane

Betsey Ross
Veteran Member


Date Joined Mar 2011
Total Posts : 1056
   Posted 1/4/2012 4:28 PM (GMT -6)   
You dont know me but Im sending you loving hugs and best wishes.

Please keep in touch with us. All of us care.

Betsey
crushed lower knee and vertical fx of tibia/external fixator placed/plates and screws and tried to place big pieces of cartiledge under knee cap/tremendous pain in affected leg continously without improving/allergic to metal in left leg/leg isnt straight/ metal removed in July//then total knee replacement/straighten out leg/more phsyxical therapy/take oxycontin,flexeril,cymbalta,vicadin for BT

Rhaevin
Regular Member


Date Joined Jan 2011
Total Posts : 230
   Posted 1/6/2012 2:52 PM (GMT -6)   
Hoping to get connected to the FB group. It's easy to find me on FB. Will try and do a better job staying in touch with everyone from now on.
 
Mindy, got to use the wrap for awhile, however it's been a real mild winter here.  cry   For the most part our temps average mid 60s. So I'm more often then not in a t-shirt. I find I have almost no tolerance for extreme heat or cold, and oddly the cold (unless super cold) doesn't phase me. Not sure if that's a good thing or a bad thing.
 
Originally injured 10/26/2007 - Initial diagnosis; Tendonitis
Have seen several specialists; Bone, Muscle, Hand, Neurologist, Chriopractor, Physical Therapist...
Went through a battery of tests, multiple MRI's
11/16/09 finally diagnosed CRPS - Stage 2
Permanently disabled, on Oxycodone, Celexa and Zaniflex.
February 2011 successful SCSU trial
May 2011 SCSU implanted

Monty's Mom
Veteran Member


Date Joined Aug 2010
Total Posts : 664
   Posted 1/9/2012 1:03 PM (GMT -6)   
I am just honored that you still have it!

Our winter has been mild too, oddly so. I have been hot and cold sensitive for ages. I can't remember a time I wasn't now.

Hoping you are doing well today.

Rhaevin
Regular Member


Date Joined Jan 2011
Total Posts : 230
   Posted 1/11/2012 2:13 PM (GMT -6)   
Mindy, are you kidding? I couldn't dream of getting rid of it! That shawl is far to special. It spends most of the time draped over the back of the chair in my room (my Tortishell kitty likes to curl up on it); that way it's right there if I need it. *hugs*  It's something I'll always treasure.
Originally injured 10/26/2007 - Initial diagnosis; Tendonitis
Have seen several specialists; Bone, Muscle, Hand, Neurologist, Chriopractor, Physical Therapist...
Went through a battery of tests, multiple MRI's
11/16/09 finally diagnosed CRPS - Stage 2
Permanently disabled, on Oxycodone, Celexa and Zaniflex.
February 2011 successful SCSU trial
May 2011 SCSU implanted

Monty's Mom
Veteran Member


Date Joined Aug 2010
Total Posts : 664
   Posted 1/12/2012 12:25 PM (GMT -6)   
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