Real Mom

“This is my real mom”

Enchanting music plays from these kids’ instruments. I adore listening to them play, the experience it gives my soul. I want to be able to enjoy every note, every second of it.

In reality        How long I have been sitting here repeats in my mind. I obsessively check the program, how many songs now? I can do this, only 5 more songs to go…

J’s band was on stage first with their 3 songs so technically I can leave. But I sit pretending that I am handling it okay because there is no way in hell I am leaving without seeing J after this, all handsome, smiling in his tuxedo.

I  practice  ignoring  the  pain,  the  un-comfort  I  feel  seated  in  the  back  of  the theater  as  I  keep  at  least  one  of  my  hands  squeezing  my  shoulders,  the  back  of  my  neck,  my  head,  trying  to  stave  off  dizziness  and  whittle  down  the  pain.  Even  though  I  have  brought  my  own  chair,  it’s  still  a  pain  in  my… allover.  I  continually  shift  in  my  fabric  seat,  moving  the  pillow  that  has  accompanied  me once  again,  trying  to  make  this  position  just  a  little  less  crappy,  moving  my  head  to  get  the  angle  better  for  my  neck.  I  will  finish  this   damn  concert  that  I  love.  I  can’t  even  fathom  sitting  for  over  an  hour  in  their  rows  of  seats.

“Oh how smart of you to bring your own chair.”

“Now you got the right idea.” People say to me as they pass.

I have learned now to just say “yep” as opposed to “well I have to do this blah blah bla”

Usually  I  sit  alone  back  here.  The  principal  and  vice  principal  leaning  against these  back  walls  surely  loving  their  students’  brilliance  yet  secretly  counting  down the  time  until  they  get  to  go  home  after  a  damn  long  day  at  work.  There  is  a photographer,  and  down  the  way  a  person  in  a  wheelchair.  I  sit alone  usually,  but  tonight  AJ  is  with  me.  I  made  him  come  and  sit  in  one  of  our chairs  with  me  in  the  back.  Tonight,  he  is  with  me.  We  finished  with  Costco  shopping  before  this.  I  needed  him  to  join  me  to  help  deal  with  moving  groceries  around  and  heavy  stuff.  I  am  happy  sitting  with  my  son,   my  youngest  love,  enjoying  one  of  J’s  last  ever  band  concerts.  So  it  was  nice  to  have  AJ  with  me  instead  of  sitting  back  here  alone  like  a  leper. But  on  the  bright  side  I  am  not  crammed  in  with a  bunch  of  other  people  and  the  concert  was  awesome  as  usual. 

Before the concert was over one of AJ’s step aunts comes up with his two young step cousins to say goodbye; the kids are getting antsy. It has been several years now since I have seen the kiddos, they were little and it wasn’t often that I ran into them. Their aunt mentions a few things and asks if they remember me. They don’t. Smiling I tell them “hi, I have met you before but you were much littler.”  They remain shy and silent.

And AJ tells them: that guys…”this is MY REAL MOM.” And he says it with loving pride. My breath stops. My soul staggers. I cannot cry. I cannot cry.

I asked him if people thought M was his real mom. They do. They assume so, since she is the one always around. I couldn’t cry yet, I had to wait until the concert was finished and I was alone.

I am ever thankful for their dad and step mom, my kids are lucky to have more than one loving family. We are all surrounded by love. But it didn’t make my hurt any less or my kids’ hurt less either I imagine. This is the reality of our situation. 

My reality in that moment: chucked a hammer into my heart, breaking off shards for future mosaic creations. 

Books

   Behind my bed is a shelf, that my oldest son made in school last year, the dark and shiny wood chocked full of books. A variety of nonfiction subjects along side many works of romantic fiction usually. The romance books run the range from pure and innocent to down right raunchy. That is the beauty of books; getting lost in the 1800’s in the God centered time of life riding wagons or the enchantment of something magical, perhaps some dirty hot sex for you, or feeling the emotions of the person who has lost someone they love, you can learn how to save seeds from your own garden or even self massage techniques to free your shoulders and neck and getting a first hand view of what it is like to live as a quadriplegic. When you spend so much time in your home or in your bed books become your adventures, your exciting story to tell, your vacations and your focus away from your crazy life. 

Now that I have so much time on my hands I found a love of books; comprehension was an issue when I was young so I didn’t do a lot of reading until I became an adult. The library has become a most important entity in my life. I love seeing my email from the library stating what books or movies I have in. I use goodreads.com to organize my constantly added to “to read” list and keep track of my “read” list and search reviews etc…It’s a great site. I participated in my first ever reading challenge in 2015 and surpassed my goal of 50 books. It may not sound impressive to some and others may wonder how in the hell I managed it or even why I bothered at all ha ha. It doesn’t matter. I am damn proud of my accomplishment and this year my challenge is 60 books.

The thing about a reading goal is that, it is one I can actually attain, one that doesn’t include needing to do anything physical, no exercise or daily work for a designated amount of time. Finding goals for myself has proven a vital role in my happiness as a person. Most of my goals are little daily things such as today I will fold and put away a load of laundry-granted this laundry goal doesn’t often enter my to do list ha, or walk outside for a few minutes since I haven’t been out of the house in days, maybe working on a piece of jewelry or just finally making some phone calls I probably already should have made and some days to finish one of the books I am reading. There are days my goal is merely making it up and down the stairs a few times to get food and water. So thanks to reading I find something to aim for, something to escape to and something to entertain me or influence my feelings. 

More about books shall we? We shall. Do you have a favorite book? Perhaps a genre you repeatedly choose that won’t let you down? Is there an author you are obsessed with and you cannot possibly wait until their next novel is released? The last book I finish had me balling buckets by the time it was over, full on ugly snort crying…I loved it and haven’t yet begun reading the sequel, my emotions needed time to settle. 

So I don’t know if you can comment easily on here or if you must have some sort of account or something but hey if you can, talk to me about books. I would love to hear from you all.  

At Home

March 2013

I remember laying in my bed in the hospital with tears streaming down my face as my home, my possessions, my kids’ things and our lives were being moved out of my apartment.  The past 4 years my children and I made this our home. This apartment happened to be up 3 flights of stairs, that was 48 steps my body could not face. My finances had already lost their battle so I had to move. 

 In all of my 33 years on this planet, organization was never something that came easily. I have tried in the past and failed miserably. But now I was driven by some invisible force to make this happen and Pinterest gave me the inspiration, gotta love PINTEREST. With so much time on my hands that summer 2012 I appreciated having something to do, to focus on and to accomplish. I went through every inch of my apartment and reorganized it all. I recycled, donated, threw away, re-purposed, re-arranged, cleaned out, wiped down and spray painted….I found a place and a purpose for it all. A good looking, well working design to please my brain. My apartment was a good size place so it took me a few months to get through it all and put in the finishing touches. I was ecstatic with the results. It was as if the invisible force was fate saying to do this now, so that your family and friends can easily deal with it later when you aren’t here.

Then 6 months later my family and friends did go into my well running machine to pack it all up and get it out. I spent my time in the hospital working to be mobile again feeling somehow grateful and depressed at the same time while they said goodbye to my home and my old life without me.

It was exceptionally hard knowing I never got to step foot again in my home. My place of refuge, my place of peace, centrally located to everything I needed. I miss my queen size bed and my kids jumping in to sleep with me, and taking them to their sports games. I miss my friends, my college, working and my social life. I miss stopping by QT to grab a coffee to start my day…and I am eternally grateful to the universe that I had that part of my life and those memories made.

My family and friends may have thought it sucked but they were good sports about it all. I wasn’t even aware who all was around those weeks getting things into boxes, they just did it. They didn’t complain and never made me feel unworthy of their assistance. I am forever grateful for them. Remember they had to do all of everything, gathering, packing, moving. All of it. They did a great job. I have some fantastic people in my life.

 I had managed to actually misplace something…personal, despite my awesome organization. During the packing process my trusted sister couldn’t find it in any of the places I mentioned. This was definitely something I only wanted Monica to locate-even though I am pretty open about things it was still embarrassing, probably due to my vulnerable situation. Well, I had been nagging her about a hat box under my bed, it was a perfectly good container for packing things so she should be utilizing it. My unconscious must have known something I didn’t since I kept nagging Monica to get it out and use it. Unfortunately, it was my poor brother in law who got out that hat box where he found my confidential, personal misplaced things- BWHAHAHAA.

Luckily, we all have a great sense of humor. And so, life goes on. 

 

Damn Tumor!

A tumor growing on or in your spinal cord is never a good thing. 

As I have gone through life never did I think I would end up disabled with a spinal cord injury caused by a tumor. I knew the possibilities of diabetes, heart disease and I still do, or the terrifying idea of cancer. But finding out that you had a mass growing inside out thru your spinal cord your entire life since the first few weeks after conception until thirty-something years old just isn’t a scenario you play out in your head. Although my spinal cord injury (SCI) doesn’t follow the usual route caused by some type of accident doesn’t make it any less real. I suppose it is similar to those with MS, lesions on your spinal cord. The mass grew slowly, damaging nerves, making itself comfortable growing its own nerve rootlets and wrapping up the rest of my life in its grip. My spinal cord tumor (SCT) was a Lipoma-A fatty tissue mass that altered the track of my life.

People would ask me if it was cancerous. And then they would show relief that it wasn’t, which frankly kind of pissed me off. Because to them I wasn’t actively dying so it was not a big deal and not very serious. Possible paralysis, pain, neuropathy, bowel and bladder problems or loss of, loss of sensation (imagine loss of sensation in your nether regions), spasms, sensation issues, weakness, trouble walking…. that is some major crap, not to be taken lightly. It may not spread like cancer and carry the idea of death although some benign SCTs do carry with it a possibility of death, but let’s face it that is no walk in the park. Some SCTs are cancerous, but mine was not. I am in no way trying to reduce the impact malignant tumors have on ones life. This is my story time though and my experience.

Can you imagine preparing for a surgery in which a neurosurgeon will drill out the back of your vertebrae cut into your dura and remove a tumor that is attached to your spinal cord…..

 “this is very serious, it is major surgery, unfortunately your tumor is in a bad location right between your shoulder blades, you use your arms for everything…. you could end up PARALYZED”. These are the words I recall the day of my appointment to schedule surgery to remove my spinal cord tumor. (February 2013-4 months since diagnosis and after seeking other opinions).

Honestly for those 3 weeks after that appointment until surgery day I was just not that worried. Clearly my positive outlook would save me from any real harm right? I focused on healing doing my guided meditation cd often at night. I remained in the moment and enjoyed myself in whatever I was doing. I drove my car, spent time with friends and made sure my kids and cat would be looked after for 3-5 days. That was how long my hospital stay would have been if it had all gone according to plan. I am sure some of my calmness was denial as well. Of course it was in the back of my mind; I recall sitting in the huge green chair in my living room making hemp bracelets and talking with the universe- god- gods… I said as long as I have my hands to use I could deal with not having my legs. But I wasn’t feeling nervous at all until the night before the surgery. I was a lucky one, my tumor was only outside of my spinal cord, not inside of it… better outcome possibilities….

My MRIs prior to surgery were done without contrast, therefore they didn’t see the lipoma growing inside through the spinal cord as well. They got in there and this f#*k@!g thing was outside of my spinal cord and growing thru to the inside of it. I didn’t consent for someone to cut open my spinal cord. Had I known at the time I probably would have put off the surgery.

I am, however, glad now that I went through with it. It is the first time since the surgery which was a year and a half ago, that I can say this with confidence. I continue to see the few others with my type of mass- lipoma- and none of theirs could be removed, only reduced in size. My neurosurgeon removed all of mine, with the exception of a small dot which could possibly grow back slowly over time. We won’t think about that now. I don’t know what tomorrow brings or if I have a tomorrow, so I try to take things one day at a time. I am a lucky one, that much I know. 

My scar while in the hospital, the lipoma was almost that big, the scar is just a tad longer for accessibility reasons. T1-T3 SCT resection with laminectomy. 

 

Time Line

 I am not here to illicit pity from anyone, information is my goal; a different perspective and understanding of how life is now and how I got here. The posts won’t all be this lengthy, this was necessary.

Some could say the last few years have not been kind…..

   August 2011– My car of 10 years kicked the bucket, goodbye car. I quit my job of 4 years, delivering pizza, due to difficult workplace situation. I found the same night I had been awarded work-study at my college, talk about fate.

  September 2011– My 1st official week of work-study and several hundred pounds of particle board came down on top of me pinning my legs, feet and all to the ground. Having a severely sprained my MCL on the outside of my left knee, my left knee and right leg shin area took the brunt of it suffering bruising and swelling all the way down to my bone marrow. They couldn’t rule out tiny micro fractures either. I used crutches, a brace and finished rehab in the end of December. I have scars and tissue damage, and pretty sure nerves were damaged.

   Spring 2012– I noticed while trying to do squats one day that I felt a weakness I have not known before, nothing major so I ignored it. I thought I was just out of shape.

   March 2012- My oldest son, J.A. moved out of my apartment and in with his dad, step mom and step brother who lived not even 5 minutes from me and my youngest son A.J. When it comes down to it, that was one of the best decisions we have made, it is what Jacob wanted and I am glad I was able to make him happy. We would see J.A. almost daily still even if just for a few minutes. I still played a vital role in his life; I am his mom he is my son. Despite how hard my heart broke, he flourished and our relationship grew stronger.

   May-June 2012- Noticed regular pain in my right knee, which was not the knee which got injured, same side as shin though. I was doing the scenic painting for the Shakespeare Festival which was very physical in nature. It was my 3rd year and I didn’t have any real issues with leg or knee pain the prior years. I just started wearing a wrap on that knee to help with aching and used ice.

On the positive side I was working and finishing my “Used Woman” sculpture which is now on public display at JCCC. I am proud of this accomplishment and I always loved the hard work it took to create. Also a physical sort of task; tools, welding, cutting, drilling, bending, lifting, loud atmosphere, painting….and so on. I love that place, great minds abound. I miss it.

   Summer 2012– Just after school ended A.J. wanted to try living with his dad too, he missed his brother. We decided to go ahead and do it. My heart broke even more. I was an emotional wreck for months prior because we had planned this to happen once school was out. My children deserve to have the chance to be happy. Two weeks later he came back home. Thank god for that.

    Late July 2012– Hello kidney stone. I had surgery to insert a stent into my ureter. I had spasms and pain and was unable to finish my work-study job at JCCC. A job that required the use of my body.

I notice my legs all tingly, feeling funny and hurting. Thinking this was because of my accident I went to the ortho who I saw for my crush injury. He said it had to be nerves coming from my back and didn’t concern my injury. It seemed to resolve itself.

   Early September 2012– After surgery to remove kidney stone we spent 7 hours or so in recovery. I couldn’t pee which was a reaction to the meds used for the procedure. I actually closed out the recovery unit. They shuffled me down to the ER so they could close up and I got to go home peeing in a bag. That was fun, but a few days later I had my mom remove it. The anesthetic had just put my bladder to sleep for too long, no lasting effects. Doc said kidney looked great, no sign of new stones, didn’t know why I had that one. I blame the green smoothies from many months prior. That will teach me not to try such healthy stuff now won’t it. He mentioned later to avoid too much peanut butter-let that be a lesson peanut butter lovers.

   Early Fall 2012– I notice I am having trouble swallowing, and some difficulty drawing in breath. I don’t have insurance and haven’t worked for a few months now. I go to free clinic and am sent for some tests of my heart after he heard a murmur and my blood pressure got high after he made me jump up and down lol, definitely have never been made to hop in the doctor’s office before. He also ordered a swallow study. I didn’t return to the clinic, but I knew the tests were normal.

   Fall 2012– My neck is hurting pretty bad all of a sudden, my right hip, the swallowing stuff, and I feel anxious like something is wrong. I go in and tell my new GP, whom I am meeting for the first time, all of this and I am labeled as anxious with bad posture. He did give me meds for heartburn which fixed my trouble swallowing, YAY for that!

I notice some chest tightness for a while now as well. And feeling as if I constantly have a bra on or a band around my ribs and torso. I also notice regular sharp pains in my breast and arm pits.

   Fall 2012 continued– I go to ER. Chest is hurting intensely and so is my arm. My heart is fine, wasted ER visit. Story of my life. I had been to the same ER a couple of times a few years prior for the chest tightness. Now I know it was the tumor all along.

I notice lots of pressure in my head, affecting my teeth, ears, eyes, head. It just felt like my head wanted to explode. I’m feeling insane at this point. Back at my doctor’s office for a walk in with a different doctor, she sent me to an ear nose and throat doc. He says “I can’t help you, you need a rheumatologist or a neurologist”. But he gave me a pack of steroids, as clearly I was suffering some sort of inflammation.

My body has started to hurt, ache all down my right side. I would wake in the morning in my comfortable bed feeling like an elderly person all achy and painful, specifically down the right side of my body. It felt as if you could draw a line down the middle of me. I believe the more noticeable weakness was showing itself as well soon.

I went to the dental college to see if something was wrong with my teeth. Nope my teeth were fine, I should have my spine checked out one of them said. ” Yes but I am scared of what it is” I said to another of the dental teachers when he said “well at least your teeth are ok”.

One day after my shower wearing only my robe I strode into my kitchen and when standing at the counter noticed something wet running down my leg. It was urine. Well that freaked me the fuck out.

   October 2012– Searching for a job, feeling more and more scared and painful I found seasonal work at the beloved Costco. What a great company to work for, they take care of their employees. I worked in the food court area, pretty physical work again. The pizzas were big and heavy, the job was hectic, and my normally strong body was struggling. After standing up to the commercial size sink doing the dishes after my 4th day of work I left in agony, very bad in my neck. I decided the next day, which was Halloween, I would go to a different ER.

   Halloween Day 2012– I tell the doctors and nurses of all of these things, and my brain just feels dumb, or sluggish or forgetful. The whole brain aspect I still don’t understand, but others with SCT have mentioned the same thing. They do CT of head, ignoring my neck pain, and one-sided body pain. She says my urine leakage has nothing to do with anything we are looking at. She is a neurologist mind you, she could have attempted to put it together. They sent me one my way after sticking me with too many needles and telling me it was my migraines. Screw them all I say, thanks for giving me the push I needed to take control of my own health.

My veins took a turn for the worse several years ago. I think 6 times is the most I have been pricked in one visit for IV placement or blood draws. Damn veins, they used to be fabulous to stick.

   November 2, 2012– After going to the park and doing some soul-searching and meditation with nature the previous day I headed into my GP with a plan. We discussed, and ordered MRI without contrast of my head and cervical spine (neck). Mammogram and ultrasound for the possible lymph nodes in my arm pit as well. If the tests were all clear of MS he would start treating me for fibromyalgia. I was able to get into a reduced rate image place the next day. He still didn’t think we would find anything.

I go into Costco, having called in sick Halloween day, and tell them I cannot work. “I don’t know what is wrong with me”. With tears in my eyes they tell me to rest for the weekend and get back to them when I was sure, perhaps I just needed a few days rest.

    November 5, 2012– I was sitting in the theater at JCCC while people did their thing up on the stage. I had gotten off of the phone just five minutes prior with my ex husband telling him something was wrong with me but I didn’t know yet what it was. Then I got the call from my doctor himself. It is the first and only time I have spoken with an actual doctor on the phone. The conversation went something like this. “You seem to have a tumor in your spinal cord, right in there with it. I think this may be what is causing some of your issues. It is not cancerous, but I have never seen one of these before in there. It is a lipoma. I have to figure out where to send you, we will contact you and let you know.” That’s the gist of it.

The funny thing is while all of this was happening these past months I mentioned to a friend of mine I hadn’t seen in a while about the pain. I stood at the stove cooking turkey burgers and said “I probably have a tumor or something in there”.

He laughed and said “you don’t have a tumor”…

Where to start?

Perfection, I realize, is not attainable, yet when it comes to something like this I feel the need to make it “perfect”. I still am not sure of why, but screw all that, I just need to get something finished.

Yesterday I went to  a nurse coordinator, which is new service for me provided by my insurance which is Kansas Medicaid. If you have a problem with my receiving medicaid feel free to x-out and don’t bother reading, the last thing I need right now are people touting how I am a drain on our society. So back to the subject- The nurse’s job is to help make sure all of my different doctors and mental health professionals have all of my updated information, and there are no holes in care I may be needing. I had to answer questions about my mental and physical health. Here is an overview of how things sounded.

spinal cord injury (SCI) from spinal cord tumor (SCT)

tumor resection with laminectomy t1-t3 (thoracic spine)

deep depression with suicidal thoughts

bilateral rotator cuff tendon tears and other stuff in there

bladder doesn’t empty & decreased flow

meds needed for bowels to work

neuropathic pain

muscle spasms

trouble walking or standing for periods of time

weakness, numbness, tingling, sharp shooting pains, burning, electrifying, vibrations, cold sensation, clonus- this is all nerve stuff

chronic pain in various places

headaches, migraines, nausea, dizziness, lightheaded, fatigue

These can all describe my new body. I don’t really have all of the medical jargon down yet, but if you are ok with it then so am I. We can learn together. I like learning, and I don’t want to be left in the dark when it concerns my body, tell me everything. Knowledge is power people.

I will briefly state what happened  and as I go along in this blog/journal thing I can fill in the details, get more personal and illuminate on my new day to day life. I had a tumor residing in my spinal column, not in the bones, but in the nervous system part. It grew inside of my spinal cord out through it and into the spinal fluid where it compressed my spinal cord in that area; so the cord there in my thoracic spine, t1-3, was not round it was flat squished against my dura.

I had surgery to remove the lipoma (tumor) on March 4, 2013- a day that will live in infamy. When I awoke my life had changed forever.

Here  http://www.apparelyzed.com/spine.html this will take you to a SCI social media site. This particular link takes you directly to the spinal column information. Go check it out.