It’s been one week since my pain mgmt lowered my pump 87%, getting me ready for extraction. In that week I’ve experienced more symptoms than I care to count. Today I’m getting an MRI, I haven’t had one since 2009. And while I’m scared, so fucking scared of what they are gonna find, I’ve made it this far. I will survive. I am truly getting through this with the help of a few awesome angels, and a willpower that can’t quit. I’ve been down this familiar road before. It just seems a bit older this time.
Good times for a change
see, the luck I’ve had
can make a good man
So please please please
let me, let me, let me
let me get what I want
Haven’t had a dream in a long time
see, the life I’ve had
can make a good man bad
So for once in my life
let me get what I want
Lord knows it would be the first time
Lord knows it would be the first time
I used to have a beautiful mind
With poetry, inspiration, songs
Like a treasure chest you dream to find
On an empty road in a field so long
The paper became my soul
Taking all the pain, the love, the loss
But the medications took their toll
No more words, no more vision, just a blur.
Today I tried to find it.
As if it’s a person or a leaf outside
I can feel myself changing, I can see the words forming.
How I’ve missed you, beautiful mind.
- Lumbosacral Neuritis / Radiculitis
- Lumbar Disc Displacement
- Lumbar Disc Displacement with Myelpathy
- Lumbosacral Spondylosis
- L1-2 2mm circumferential disc bulge
- L3-4 2mm circumferential disc bulge
- L4-5 disc disiccation and disc space narrowing. 5 mm broad based disc bulge with central prodimance. This indents the thecal sac and narrows the canal. Facet atrophy greater on the left than the right. Narrowing is greater on the right than the left.
- L5-S1 disc space narrowing. Modic type 1 and 11 endplate degenerative changes surround the disc. 5 mm disc bulge with central and right parasagittal predominance. Superimposed marginal osteophytes present. Neural foraminal narrowing bilaterally and bilateral facet atrophy
- Shmorls Nodes ( sheurmanns disease )
- Disorders of Sacrum
- Myalgia and Myositis
- Myofascial pain syndrome
- Fragmentation due to a car slamming into me in 2009
It will be interesting to see what an updated MRI reveals. This isnt even all of my diagnosis but its what I could gather. After a while it just starts to become jargon and medical terms. My pain has certainly increased. I can see and feel the changes in my body and the things I was told would happen, aren’t ALL coming true, but I’m certainly not the same person I was 5 years ago.
Some body save me from myself. I’m really wondering, how did it get to this point? And then I remember. Oh ya, I’ve been a spoonie since age 11.
I’ve had a morphine pump since march 2013. It started to affect my memory about 6 months in. After about a year, it got really bad. So bad that I started withdrawing socially. It affected me at work, basically every fn aspect of my life. The only comparison I can give thats close to it is alzheimers. It was severe, it waa scary and I honestly thought it was my brain and not the pump. So for months I begged for a brain scan, a neurology appt. Went thru several appts and hassles on that. The end result was my pain mgmt offered to change the med in my pump to dialudid. I was already on a low dose of morphine, but taking 6 other meds, in a world of pain and now in a deep depression for the first time. I had heard dialudid worked well so I figured it can’t be worse than what I’m at. I gave it a month. I basically slept for a month. I lost my job, my kid moved out, can you see my time line slowly plummeting?
I get that I gave more spine conditions than a normal person. I also know that they have exhausted all procedures, meds, methods, and the pump was my last resort. I got it because I didn’t want to be high on meds. Instead I’m a fn mess, sick, can’t eat, sleeping all the time or not at all, unable to work, depresses anti social basket case. I’m not the same person. I can’t tell if it’s all the meds, or the compound of shitty things happening in my life. But I feel in my heart, I don’t want a machine in me going 24-7. There has to be a better way.
So my dr lowered my pump to a basic trickle. And what I’m feeling is like Mfn heroine withdrawel. I used to work in a woman’s rehab. Before my disability got the best of Me and worsened, that was my career. I’m well awaRe of opioid comedown. I’ve seen every drug withdrawel there is, and this isn’t pretty. It’s one of the worst. I’m at the level for pump extraction but my dr wants me to feel what it’s like at this level before making a decision. Meaning, she wants me at maximum pain. I understand, it’s not a small surgery. It waa weeks of recovery time and two scars. I’m on day #2 and I’ve dry heaved, cried twice but I managed to go pump gas and get coffee which is HUGE. I have to move today, they are sending movers at 12 and I’m all by myself so I’m going to try and just sit here and give orders because my energy level is negative. My pain is a 12, but I am feeling less shaky than yesterday. This move has taken so much out of me, angry because I’m being forced due to water issues and I’ll be glad when it’s done.
I haven’t has an Mri since 2009. Not sure why, fear perhaps? The uc davis spine center where I am requesting to go requires a new mri, so both my pain mgmt and my primary have put in referrals for one. Sadly they are both on the same page that my conditions have worsened and that it is time for me to seek other alternatives, at uc davis they specialize in my conditions. So the next few months will be rough. I get to taper off dialudid, go down on my topamax, I’m going off Flexeril, all to determine what side effect is coming from what. Then I will be hopefully going to uc davis soon and seeing a specialist, and go from there. It’s just having the strength to get to that day lol
I’ve written so many blogs in my mind the past week. In oregon, in the car, in bed. If only my mind could transcribe,I come up with some REALLY good stuff sometimes!
So it’s one of those moments where I’m eating cereal and realizing, I’m gonna need a lot of spoons to get thru this. I can’t sleep thru it, although I REALLY want to. I have to ask for help, and I did. Now if only I could stay out of my head long enough to focus on the tasks at hand, that would be great.
Off to Dr appt numero one. Spoon in hand.
I have been planning for the last month or so to visit my Mom in Oregon and stay a week. I get to see her once or twice a year but we are very close, and I was really looking forward to this MUCH needed trip. The amount of signs from the universe from the time I left Sacramento yesterday, up until today have been pretty damn cool. I’m paying attention. The drive KILLED me. I must’ve pulled over 7 times to stretch, breathe, just get out out of the car. None the less pain level is a 12 today 😦
I’m on this trip for a few reasons. I wanted to get away from all of the stress I have going on, and the horrible apartment I’m in at home. I wanted to see my Mom. I wanted to do a little research into the possibility of moving here, as that seems to be an option I may take at some point in my life. I wanted to bring my mom up to speed on my health, as I haven’t told her a lot of things. When I share with her bad news, my disability issues or just my life in general, a lot of time I get off the phone feeling very sad for making her sad. Or I feel an get that she didn’t make time for me when it was important. I can’t be a burden to those I love, it’s a very hard line to walk.
So far our first day has been awesome. We went to a pumpkin patch and I saw actual pumpkin chunkin. I heard about it on an episode of Modern Family but it really exists! Then we had a nice movie night,with munchies. Her husband enjoys the marijuana and I’m currently partaking as my pain level and nausea are too much to bear so we enjoyed some Oregon mango kush, and relaxed. I honestly could not relax and never stopped moving, never stopped fidgeting. My pains so bad, I can’t even catch my breath. I’ve learned a lil something today, and I have a feeling I will learn a lot on the next 7 days.
I need to speak up about what I need. When I’m hurting especially. If I’m going to advocate, I need to do it all the time. People can not read minds, they do NOT pick up on hints. Yes, I will get some bad reactions and that’s ok. I can’t always walk, or stand. I need to take breaks, and go slow. I need liquids because my mouth is dry, and have to be close to bathrooms. And when I stay quiet and not speak up, I’m lying to myself and everyone around me. That will only keep me invisible. I’m disabled. I was born this way, I’ll die this way. So I better figure out a way to communicate. Better than I’m trying too now. And I am trying.
I’m really happy to be here with my Mom. I love Oregon. 38 or not, I feel like a kid the second I’m around her. It probably has something to do with the sugar. I’m just glad I’m able to eat something. Be well my friends.
Aa someone who suffers from severe chronic pain, I benefit greatly from medical Marijuana. Only in the great state of California, it’s illegal. I’ve lost doctors, gone without medications and been in extreme pain for my right and choice on how I want to treat my pain. I hope one day we are allowed to have medicinal marijuana and medication. For people like me, who have a lifelong of pain, it’s only right. I am not an addict. I’m just trying to survive.
The governor’s endorsement Friday of the legislative package hammered out by lawmakers was expected because his office crafted many of the details.
There’s a million things. And I’m trying hard to make sense of it all. I noticed it about a month or so ago. I stopped doing my hair. Stopped doing my makeup. I stopped showering everyday. I stopped going out to shows and being social became more and more of a chore and just not as fun. I deleted my social media pages and changed my phone number. I feel anxious, I didn’t want to share my hardships only to hear the judgement, the “I’m sorry your having a hard time” the assumption that I somehow have control over this chaotic life. I wish with my every being that I could work. That my spine was normal. But it’s not. And for a long time, a very long time, I was positive. I inspired others. I put together benefit shows, and had strength. It’s not there anymore. Bits and pieces find me here and there but for the most part, it’s me, my thoughts and my bed.
The thing about depression is, I get upset when I see other people flourishing. Happy, going on trips, in love, at the gym. Doing normal day to day activities that I can’t do for whatever reason. It’s not their fault and they can’t see my scowl, and I have instant guilt about this feeling. They say with pain comes depression. So is it the pain finally wore me down? Did life finally beat me up so bad that I just can’t fight back? My kids have always been my motivation, and currently my oldest won’t speak to me, my middle daughter just moved out and isn’t speaking to me, all I have is my sweet son who’s 14 and has no clue just how bad mommy hurts. I just wanted my kids to be happy and instead I feel like my body is ruining their lives. The thing about depression is, it affects everyone around you. Some good, some bad. Mostly bad …..