View Full Version : Looking for a little help

02-23-2014, 07:11 PM
I'm posting this via mobile so I apologize for its composition-my mind isn't all here either so I also appogize if don't convey things appropriately. Over two months ago I had fallen on the ice & started having severe pain in my hip. A week or do later I fell again this time even sitting on the toilet was pretty much impossible. (I've posted something in reference to this awhile back). Over the last two years I've been braking bones, tearing ligaments & destroying tendons with little or no cause. I've had two wrist/ulna surgeries, fractured vertebra, stress fractures to my tibias, I've destroyed my left knee, rotary cuff etc. after my knee (the most recent) I wanted an explanation (I'd always been rough on my body through extreme sports or tough physical labor-I'd broken bones sure, but nothing under such minimal conditions or simply by fluke in such rapid succession). The answer I received from many doctors (from my primary, orthos & Rhuemy) that the cause was my sle. In between al of this has been more frequent flares-my kidneys & lungs being the prime victims. My kidney involvement has really spiraled out of control in the last year-I can't honestly count how many procedures, infusion center etc I've done in the last six months alone...but it's been a LOT. (I'm sorry if this seems off track but I'm explaining all this to aid comprehension of my current situation) before my quality of life wasn't high on the mark-but it was livable. Tolerable. This last year, this last few months I feel as if everything is spiraling out of control. The old intermissions brought me hope-I got a taste of life again...it was enough fuel to push me through the next downward slope. But now, it's like there is never a brake. It's one thing on top another, on top of another. It takes a lot to slow me down-something my physicians were always lecturing me about. I paid the price, but those few moments in between...well to me they were more than worth it. Even when I've faced long recovery times after surgeries, I progressed far beyond what the doctors could comprehend-because I pushed. I wanted "me" back and I wanted me back as fast as humanly possible. I don't like taking pain pills, I really despise it-not because I think it's being sissy or anything, but because I don't like the way they make me feel and I don't like how they dull my realities...I've found if I know something hurts-I can work with that. It's my body telling me what's too much, I'm not over exerting & then unwittingly injuring myself...something Ill be very much aware after they wear off but I'll be a day late & a dollar short. My drs have tried convincing me to take things like OxyContin, perkiset (sp), morphine etc. in a last ditch effort they're constantly trying to shove Vicodin down my throat (my husband can testify to how they try to peer pressure me into the drug-which I HATE.) the only thing I've allowed has been Tylenol #3, which I will not take unless its absolutely dire (for example-after my back surgery I only took it a total of three pills).
So now ill get back to my original plight-my hip. I went to the hospital after the second fall, the only thing they focused on was a blood clot-i was getting short of breath & my leg was red & swollen-ive had them before in that leg, but they gave me the all clear & sent me home. after the third fall shortly after, i couldnt do anything-not even sleep. So i went back into the hospital where they brought up about avascular necrosis & a fracture. It was so intolerable I agreed to a few good doses of morphine before going home. I followed up with my dr the next day, but the focus had turned to my face-that morning apparently from the fall-my face blew up like a balloon. Really that's an understatement lol it was ginormous, I couldn't hardly open my mouth to talk, let alone eat it had gotten so large. My whole right side of my face began to sag as if I'd suffered from a stroke. My dr. Told me to stop my metho & sent me in for 10 days of iv vanco. I'd told him that I was still suffering with the chest pain & shortness of breath. He told me we had to deal with this first, but scheduled me with the ortho the day after my last dose of the vanco-because of the hip fracture.
In between then I fell yet again. My face got better, but nothing else did. The ortho sent me for more X-rays and an MRI. During this time my inflicted leg began to feel odd (you can refer to my zombie leg post). I brought this up at my follow up which my Ortho sent me for a full body bone scan-he said he wanted to rule out cancer or any other problems before he went in for surgery. Within this time I fell again, yes, again! My legs have become so unstable that any thing remotely slick I go down & I go down hard even with crutches :-/ so I followed up after that & then everything suddenly changed. To start he was irritated with the hospital that preformed the scan because the dr or whoever that was suppose to interpret it, didn't. There was nothing on the final report save his signature. At this point this is when he started questioning me about my rheumatologist-what did they think-what did they think I should do. I told him relatively that I didn't know because I was on the waiting list to get into my new Rhuemy. He told me I had to get into one-that they're the ones who can help me. He went over all my symptoms again, we talked about my back but he kept repeating "this sounds like the hip" I felt like saying "duh". So he sent me across the way for a spinal X-ray-he was sending me to his partner the spine specialist just to rule out back involvement with my history. After the X-ray they brought me back to his office & he examined the X-rays. He said he didn't see an issue save for this odd "contortion" of my muscles in that area. He briefly mentioned some disease which I didn't get the name of & then sent me out to schedule with his partner.
So last week I saw the spine specialist, walking in the nurse was unsettled with my walk and contorted appearance (now its as If something pulls me over to the right, it's very hard to stand or lay straight, my right leg is also become like its "pulled" to the outside of my body. If I or anyone tries to force it to turn inward-pain rips through so severe I start going hazy as if I'm about to pass out. She went through all my things, asked me in depth about my RA & Sle. When the doctor came in he examined me, had me attempt waking unassisted, checked reflexes etc. he said he would send me for an MRI of my lower back, but that he too felt it is my hip. He also followed suit in telling me this is something my rheumatologist could piece together. He said that after my MRI he would consult with my hip guy and they will determine what I need to next. The next day I broke down & called my kidney dr-it had been about a week and a half I started noticing trouble. When the receptionist answers she immediately asked if I was who I am, I told her yes that I was wanting an appointment (everyone knows me on a first name basis lol) and she proceeded to tell me "Good, I was just about to call you. Dr. So and so called they noticed a problem on one of your recent scans. Dr wants to see you tomorrow." Okay, it was kinda weird but nothing I wasn't aware of. So I went in and he's running all these different tests, I go back to him Tuesday-the radio tech is in & he wants imaging done in office along with an appointment.
The past couple days I've been knocked out with fatigue. I feel like I've been hit with an elephant dart. At my appointment with my kidney dr I'd not been running fevers-which he asked me a bazillion times. But that night & until today they've been spiking higher and higher (not abnormal, typical course it runs). But my hip...well that's suddenly gotten worse. Now when I stand my left thigh feels "hot" like someone's touching me with a hot pad that recently had a hot lot of veggies on it lol but then it starts feel like its falling asleep-just my thigh. It's not like tingles or pain, it's exactly like when your arm falls asleep. It progresses quickly to where it feels like I've gotten a shot of novicane in my thigh. That weird numbness-not like numbness I've had when my nerves were being severed by a chunk of vertebrae. It's like the numbness you get when u fall asleep on an arm-If that makes sense. And then last night my shortness of breath got worse-when I was laying in bed reading my son a simple sentence a page story, I was having a hard time even finishing the page without gasping for air. Once in bed for the night, I woke up multiple times with my heart feeling as if it was racing & struggling for air. It was so prevalent I was about to wake up my husband to take me in. Today it's been coming & going with no rhyme or reason. And now the left thigh isn't relieved when I sit-its been numb for about two or three hours now, and now my right hip feels as if its been pulled out of socket. I have these patio chairs with cushions-they have been my sanctuary. My husband has placed one In the house & garage for me...but sitting here as I'm typing I cannot find any relief :( I know this a lot to take in, it's very complex & whatnot. But I've been doubling up on my pain meds the last 8hrs (which is allowed but I've never had to do) & honestly I'm at my wits end. Idk if anyone has ever experienced anything remotely like this-any part of it. Or has any advice-or has any idea who I should turn to. I feel as if everyone's pushing it off on someone else, and the hospitals here are hopeless-they'll simply dope me up & send me out-so if there's any place that could be suggested I go? There's a hospital two hours north but we are very low on funds atm-I guess I'm looking for reassurance if this would warrant the trip.

02-23-2014, 07:12 PM
Thank you to everyone has taken the time to read this. I know some things no one can answer, but having an outlet just to speak about it...well it's a burden lifter. I know I've strayed the last year or so due to everything....but I feel as though when I'm in doubt this is a place I can turn to, people to lean on other than my family that is already so burdened with all of this. People who understand. And just not feeling so alone and lost...just thank you.

02-23-2014, 11:17 PM
( ( ( H U G S ) ) )

wishing you answers and relief

02-24-2014, 03:01 PM
Hugs and Good thoughts being sent your way.

02-26-2014, 03:14 AM
Update: had my spinal MRI Monday & followed up with the spine specialist Tuesday (still my today) & had my scan done @ my Kidney dr. The first appointment...there really are no words to express how I'm feeling right now. Empty? The news, it wasn't good at all. He was very apologetic & when I began crying he started to-which I've never had a doctor do. At first all I could keep saying was "no" and he pulled up the images on his computer to show me just the severity of things. I can't define everything (I have a copy of the report which I may post later-I just don't have the oomph atm) but simply put: I have another severe disc protrusion at the level where I'd previously had surgery. 75-85% of my spinal cannel has been closed off, the protrusion measuring 11.5x13x11.5mm. At another level 65%. Another is bulging and entrapping another nerve & then a third herniation below the first. He told me he has never witnessed one as large as the first-he surely wasn't expecting this. He told me I'm Looking at partial to full paralysis of my lower extremities. He said there is nothin that can help at this point besides surgery, and that's not a guarantee. He said that he understands that no one wishes to have such a surgery done here locally, but mayo or even north western university the wait will be too far out. He told me I need to prepare myself & that he "cannot allow me to leave his office without knowing I'm aware of the severity of the situation" and that I may begin to notice even within a weeks time bladder & bowel Incontinence, increase numbness that I may not ever recover. He tapped my crutches and told me that this may be the best case scenario but unlikely. He immediately called a local neurosurgeon who I see in the morning. They also found abnormal hematological in my bone marrow that has to be further evaluated. They sent me straight to the main desk to have my MRI burned & for a copy of my report to take tomorrow...I felt like I could hardly keep it together. This has been a looming fear for four years now & I feel absolutely helpless. During my kidney appointment my mother who was driving me called mayo clinic-afterwards I spoke to them but before they can even accept my new insurance info-saying most likely I could get in for surgery with my previous neurosurgeon that I had to pay a 3700 bill-a bill I'd argued about years ago & my insurance took over because it was their responsibility (long story short) I stressed this and she said that even so it's been four years & it's too late to appeal it even if they did pay. She would drop it to 3000 but no less. I told my mom & husband that this wasn't an option. My sister showed up on my door step moments after we arrived home and told me she would pay it. That this was too important (the one who was in a coma for several months after her back surgery). At the kidney place, I found out that my dr was called away on family emergency & wouldn't be back for two weeks. But they did the scan & my left kidney is again riddled with stones & I still have extremely high amounts of blood. They made me speak with the office manager, I told her everything that was going on & that I'd rather wait for my dr not his partner. She finally agreed but insisted that if anything were to get any worse I was to contact them immediately & head to the hospital.

It has been the day from hell. I have no idea what I should do. Even if we did go to mayo & I accepted my sisters money...how we'd manage it. In the other hand, idk if I should even roll a gamble with northwestern-I've never been there, some of the surgeons I saw didn't have such high of ratings despite ranking #11 in the u.s.

Another worry that comes into play is now I have seizures, when I had my last surgeries it was a huge to do because they said the anesthesia can aggravate my seizures & I risk seizuring during surgery. I know my neurosurgeon from before was very caring & very good. I had slim chances then & I walked out of the hospital. He even gave me part of my vertebra in a sealed container that was severing my nerves because he thought I earned to "keep the bas***" which was really done in a touching way.

Altogether though its something I never wanted to experience again. Especially this time with a fusion...I don't think I'm strong enough to handle it. Physically, mentally or emotionally.

I'm sorry for rambling...I'm just so lost and afraid idk what to do with myself