Category Archives: Disability

ANOTHER BLOW — SYRINGOMYELIA

Good morning, all. I kept the promise to myself on Friday that my post for Celebrate the Small Things would be all positive. I did that. Now, it’s time for me to post the not so great news. It would be an understatement if I said I wasn’t freaking out just a little bit but I’m doing my best.

When I saw my neurologist Dr. G on Friday, he went over my MRIs with me. The brain MRI was as expected. No new aneurysms or anything like that. Yay, for that. I wasn’t so lucky with the cervical spine MRI.

mcdc7_syringoyelia_cyst

Photo from the Mayo Foundation

It seems that I’m one of the few that suffers from syringomyelia. It’s a disorder where cysts (syrinx) forms within the spinal cord. There are two types:

  1. In most cases, it’s related to an abnormality in the brain called Chiari I malformation. This causes the lower part of the cerebellum to protrude from its normal position in the back of the head into the cervical or neck portion of the spinal canal.
  2. The second form occurs as a complication of trauma (like my car accident in 2011), meningitis, hemorrhage, tumor, or arachnoiditis. In these cases, the cysts (syrinx) develops in a segment of the spinal cord damaged by one of these conditions.

According to the National Institute of Neurological Disorders and Stroke (NINDS), approximately 40,000 people in the US are affected. Couldn’t I have just won the lottery instead? Just sayin’…

Many of the symptoms are similar to the ones I currently have from the bleed, but it could explain why I’ve had a couple of falls lately. Dr. G wants another MRI done in six months to see if it’s grown or expanded. The usual treatment is surgery if the cysts increase or expand, but I’m trying to remain optimistic that I won’t have to go that far. I’ll be monitored by Dr. G and have a follow-up cervical spine MRI in six months to check.

Oh, and I’m back to having to use my cane indefinitely. Blah. Thank goodness he’s got me going to physical therapy soon.

If you’d like more information on this disorder, you can go to the NINDS site.

Like I said, I’m going to try remaining optimistic that the syrinx won’t grow or expand and routine follow-ups will be all that’s required. I love you guys and would appreciate any positive thoughts and prayers you can send my way.

Have a great week. Xoxoxo

 

Redefining Disability Challenge- WHAT I WANT THE PUBLIC TO KNOW

Hello blogger friends and welcome. Here is another post for the

redfng-disblty2Redefining Disability Challenge started by Rose B. Fischer. If you click on the image to the left, you can see exactly what it’s all about and feel free to join. Answer as many of the 52 questions as you like, or the ones that pertain to you. There is no time limit. Answer them in one post, one a day, a week, or whatever fits your needs.

I’m going to spread the questions out over the remainder of the year since a lot of the questions pertain to me already. For today’s post I’m going to answer question(s) 23 .

23. What would you like the general public to know about your disabilities, disability in general, or any other relevant subject?  Above all else, I want the public to know that I no longer consider myself as having a disability. It sounds too permanent and it’s taken me a long time to get out of that mindset.

When people ask me now, I tell them the truth. I suffer residual effects from a sub-arachnoid hemorrhage / hemorrhagic stroke that occurred almost four years ago, and an ischemic stroke that occurred during brain surgery to repair the above.  The occasional seizure activity, my neuropathy, pain, depression, and cognitive deficits, I now call my ‘conditions’.

My doctors say I’m still unable to work at all right now, but I’m going to keep moving ahead. One of my goals is to recover enough cognitively that I will be able to handle meaningful employment on a part-time basis at least, within the next year. Three of my doctors feel it’s a doable goal, one has a let’s wait and see attitude, and I just switched PMDs, so she’s too new to give me her opinion. She can only go by the records she’s received from all my other doctors.

When some people hear the word ‘disability’ or ‘disabled’, they automatically associate it with something negative. My conditions don’t define who I am nor do they define who I want to become.

I should not and do not want to be treated differently because I had a medical incident. Have I been? Of course. I am still a good, loyal, and trustworthy friend. Because of that, I’ve been taken advantage of in the worst ways possible. Never again.

Do I have to work harder than most to accomplish things that most others take for granted? Yes, I do. It’s because of having to work harder that I’ve learned to appreciate the little things so much more now. I’m still me, and that’s a good thing.

Until next time…

 

 

 

Redefining Disability Challenge – GRIEVING WHAT ONCE WAS

Hello blogger friends and welcome. Here is another post for the redfng-disblty2Redefining Disability Challenge started by Rose B. Fischer. If you click on the image to the left, you can see exactly what it’s all about and feel free to join. Answer as many of the 52 questions as you like, or the ones that pertain to you. There is no time limit. Answer them in one post, one a day, a week, or whatever fits your needs.

I’m going to spread the questions out over the remainder of the year since a lot of the questions pertain to me already. For today’s post I’m going to answer question(s) 22.

 22. What would you tell someone who has recently been diagnosed with your disabilities or disabilities that you are familiar with?  That’s a tough one. I know, because nothing anyone said to me when I was coherent enough to understand what was going on, made me feel any better.

It was as if I had to go through all five stages of the grieving process to get to where I am today. I would tell people they would most likely experience something similar.

Denial – Refusing to believe the diagnosis is true; there must be some mistake.

Anger – Expect it. Even now I have moments of anger, but nothing compared to what I first felt.

Bargaining – I tried a lot of this with God for a good three years during recovery. I pled all the time. ‘If you’ll just make me whole again and let me get back to EMS, I promise I’ll be a better EMT, person, friend… You name it, and I tried to bargain for it.

Depression – This went hand in hand with the bargaining. I still suffer from depression, but it’s mostly under control. I pray a lot, meditate, and focus on the things I still CAN do. I would tell anyone suffering depression after being diagnosed with a chronic illness or major medical incident to PLEASE get help if they feel too overwhelmed and helpless.

Sometimes family and friends aren’t enough. There is no shame in seeking professional help. Almost five years post-bleed and I still see my neuro-psychologist and psychiatrist. I’m not ashamed to admit it. Why? When all is said and done, I want to feel BETTER.

Acceptance – This took the longest for me. I know that everyone is different and processes their emotions and circumstances their own way. The only thing I can say to survivors is that eventually it can get better. Accepting the changes will come. Although I accept the ‘new’ me limitations and all. I’m still striving toward a better outcome: Fewer deficits, a sharper, more focused mind, and a chance to return to the workplace as a contributing member of society.

Most important, never give up on yourself. The body is an amazing creation. You have the power within you to make positive strides. Remember that.

 

 

 

Redefining Disability Challenge – MID-YEAR UPDATE AND FUTURE GOALS

Hello blogger friends and welcome. Here is another post for the redfng-disblty2Redefining Disability Challenge started by Rose B. Fischer. If you click on the image to the left, you can see exactly what it’s all about and feel free to join. Answer as many of the 52 questions as you like, or the ones that pertain to you. There is no time limit. Answer them in one post, one a day, a week, or whatever fits your needs.

I’m going to spread the questions out over the remainder of the year since a lot of the questions pertain to me already. For today’s post I’m going to answer question(s) 21 .

  1. Free post day! — Write about anything on your mind today. Any topic that the series doesn’t cover, anything going on in your life related to disability, something you’re excited for, something you’re frustrated about.

I love the free post days this Challenge gives us. Since we’re nearing the end of June, I thought I’d give you all an update on how my year has been so far and some of the goals I’ve had tinkering around in my brain. Haha.

The year has had its ups and downs for sure, but generally has been fairly stable. The mere fact that I’m still able to enjoy life, speaks volumes. I’ve completed my physical therapy stint for the year back in April, and am currently midway through my Speech Therapy module for the year. My therapist says I’m doing really well and the strategies I first learned are coming back to me quickly.

After four and a half years, I’m finally cleared by my neurologist to drive again. I haven’t suffered a seizure in almost a year. I’ll need to remain on anti-seizure meds for at least two years before my neurologist will even consider lowering the dosage. I can live with that…for now. I’ve been able to keep my depression and anxiety under control and have been using meditation to help me through some of the rougher times.

I’ve met all my writing goals so far this year and am ecstatic about that, though my social media presence has taken a bit of a hit. I’m making a conscious effort to work on that. It’s one of my goals.

I have a HUGE goal I will be striving for, although I don’t know when I will be able to make it a reality. I would one day like to enter the story of my recovery in the Neuro Film Festival, which is sponsored by the American Academy of Neurology and the American Brain Foundation. The 2016 entries start at the end of the year, but I don’t think that will be doable for me. I’ll have to research some more.

If not, I’ll definitely set my sights on the 2017 Neuro Film Festival.  😀

How has your year gone so far? Have you had any improvements in your condition or treatment options? Have you set future goals for yourself?

I’m reaching for the stars guys, I hope you are too!! Until next time…

 

 

Redefining Disability Challenge – PREFERENTIAL TREATMENT- RELATIONSHIPS

Hello blogger friends and welcome. Here is another post for the redfng-disblty2Redefining Disability Challenge started by Rose B. Fischer. If you click on the image to the left, you can see exactly what it’s all about and feel free to join. Answer as many of the 52 questions as you like, or the ones that pertain to you. There is no time limit. Answer them in one post, one a day, a week, or whatever fits your needs.

I’m going to spread the questions out over the remainder of the year since a lot of the questions pertain to me already. For today’s post I’m going to answer question(s) 18 and 19.

18.   Have you experienced preferential treatment because of disabilities? — By preferential treatment, I mean situations where you were treated better or differently from your peers even though there was no valid reason.  I have to answer this question with a yes because I do get preferential treatment from time to time. Although my gait has greatly improved with physical therapy, I still have people jumping out of their way to open doors for me and offer to help me find things, reach for items, etc., particularly in stores. This rarely happened before my illness.

I know the intentions are good, but unless I specifically ask, I’d prefer trying to do things myself. It’s the only way I know how to find my independence again.

19.   In what other ways are your interpersonal relationships affected by disabilities? — Examples might be that it’s harder for you to form or maintain relationships or that people treat you differently once they realize you have a disability. This is a tough one because there are so many ways that relationships, the way people treat me, and my attitude towards them have changed.

While I was critical in ICU, my ex prayed in chapel day in and day out for my recovery and posted all over to cherish what you have because you never know what tomorrow can bring. We were basically over before the bleed; my understanding is that my illness was the ‘epiphany’ needed to get us back on track. While I’m forever thankful for the prayers, my ex wasn’t strong enough to handle my recovery.

The first two months out of inpatient rehab were fine, but then I was basically on my own. I had no friends in PA, and no support system. My friends were there for a while, but slowly went back to living their own lives (except for a special two or three).

I huddled more and more into myself, until I thought I would implode. Four months out of rehab, my ex started behaving as if I were ‘cured’. The attitudes came, the arguments, the belittling, and I couldn’t handle it. I became a yelling, screaming, stuttering mess of my former self. I couldn’t string a coherent sentence together without going into a rage; a rage that was aimed more at myself and my brain than anyone else.

My only solace was online. I began blogging in February 2013. I joined stroke groups and vented there. I wrote to other survivors and we shared stories, because people in life didn’t understand me or what I was going through.

I’ve been told that I’m too trusting, and I’ve learned the hard way that I am. I’ve always thought it’s better to give than to receive. I don’t treat myself to much, but I love giving gifts to people I care about. Sometimes the people you care about aren’t the people you thought they were. Once you have a disability, particularly a brain injury, some people take that as an opportunity to take advantage. Yes, it happened to me. I’ve been stolen from by someone I thought was a friend. Of course, I’ve since written him out of my life.

People sometimes ask me if I ever plan on having a relationship again. I’d like to say I would, but I can’t say. I have too much on my plate. I’ve been hurt too many times and I’m still recovering. I ask myself, who would want to be bothered with a recovering strokee? Seriously.

I don’t want to be treated with kid gloves. I want to be treated with the same respect I try to give others. Yes, sometimes shit comes out of my mouth unexpectedly. My brain wires still cross and thoughts to mouth sometimes don’t connect properly. What I think and what I say aren’t always the same. That’s frustrating as hell.

Things have gotten better in the years since the hemorrhage, but I still have work to do. This is a never-ending fight for wellness. But as one of my fellow physical therapy cohorts said:

‘As long as we’re vertical, we’re good’.

 

 

 

Redefining Disability Challenge – DISCRIMINATION

Hello blogger friends and welcome. Here is another post for the

redfng-disblty2Redefining Disability Challenge started by Rose B. Fischer. If you click on the image to the left, you can see exactly what it’s all about and feel free to join. Answer as many of the 52 questions as you like, or the ones that pertain to you. There is no time limit. Answer them in one post, one a day, a week, or whatever fits your needs.

I’m going to spread the questions out over the remainder of the year since a lot of the questions pertain to me already. For today’s post I’m going to answer question(s) 17 .

17.    Have you experienced discrimination because of disabilities? Discrimination comes in many forms, from refusal to employ or accommodate a person with a disability to treating that person with disrespect because of it. I would be lying if I said that I’ve never been discriminated against because of my disability. It’s disheartening, hurtful, and most times makes me extremely upset and angry. Unfortunately, when I become upset, angry or overwhelmed, I tend to stutter and/or cry when attempting to speak. It’s one of the residual effects of my sub-arachnoid hemorrhage and stroke from 2011 that I’m still working on. It’s why I will be continuing with Speech Therapy starting later this month.

Anyway, the most recent episode happened about two months ago when I called traffic court in Secaucus, NJ with a question about a ticket I’d paid several months earlier that hadn’t cleared through PA’s DMV when I tried to renew my license. Normally I spoke to one woman in particular, but since I wasn’t home, I couldn’t remember her name off the top of my head. Unfortunately, I ended up with a lady (ha!) named Donna.

I was already a little emotional because I’d just come from DMV and couldn’t renew my license and the title and tag place was trying to give me a hard time registering my vehicle. ?????? While I was on the phone with the Traffic Court, my friend and neighbor took care of the registration nonsense.

As I’ve mentioned in earlier posts, my bleed HAS NOT diminished my mental capacity AT ALL. My brain just needs to re-route the way it processes information and sometimes it takes longer than it used to. That’s all. I tried to explain this to the Donna person on the phone when I first got on but she was condescending, rude, and disrespectful from the beginning of the conversation.

When she asked for my Driver License number and/or ticket number, it took me a few moments to realize that she needed my old NJ number; I had my PA one in my hand. I apologized and told her everything was at home and all I had with me was my PA license. Her response was, “And what good do you think a Pennsylvania license is gonna do for me?! And why are you crying? Crying will get you nowhere with me.” I again tried explaining that I’d been there in person months earlier with cash in hand to take care of said ticket, but it couldn’t be accepted since it had to go before the prosecutor and Judge first. Mind you, I’m trying to calm down while this “lady” continued talking down to me like I was slow.

Of course, she wasn’t having any of it. “Well, I’ve worked here over 15 years, and I’ve NEVER heard of us not taking cash as payment for a ticket! Just, just give me your name and I’ll look it up in the system.” I did and she came back telling me that everything had been cleared and she didn’t know why there was such a problem. She read off my old NJ address and I reminded her that I lived in PA now. After more hemming and hawwing, she took my address down and said she was going to send me the paperwork showing that my ticket was paid in full.

I left out much of the conversation, but wanted to give you the general gist of what I went through. When I got off the phone all I could do was break down and cry in the title and tag place. My friend Tamera had taken care of the registration fiasco for me, hugged me and said, “Don’t cry Miss Eva, people like that only lose their blessings. Let it go.” I tried, but it turned out to be a pretty bad day for me.

I didn’t find out until I called NJ DMV a few days later that I had to pay the restoration fee in order to have that listing taken off the record. It would’ve been nice if someone had let me know. Thank goodness the lady at NJ DMV was a sweetheart and actually stayed on the phone with me and walked me through the procedure as I did it online. I heart her and the lady at PA’s DMV because she was a sweetheart too.

That’s all I have for today. Until my next post, have a great day all…

 

 

 

Redefining Disability Challenge-BASELINE and CHALLENGES

 

Hello blogger friends and welcome. I’m posting for the redfng-disblty2Redefining Disability Challenge started by Rose B. Fischer. If you click on the image to the left, you can see exactly what it’s all about and feel free to join. Answer as many of the 52 questions as you like, or the ones that pertain to you. There is no time limit. Answer them in one post, one a day, a week, or whatever fits your needs.

I’m going to spread the questions out over the remainder of the year since a lot of the questions pertain to me already. For today’s post I’m just going to answer question(s) 14 and 15.

14.  Describe your baseline, or an average day.  It’s difficult to describe an average day because they vary so often depending on pain levels, whether or not I have physical therapy, etc. For simplicity sake, my average pain level is about five/ten which is not bad considering I’m no longer on narcotic pain meds. I think the physical therapy, prayers, meditation, and my other meds (muscle relaxers and neuropathic pain meds) have helped also. The warmer weather is helping too.

I’m on top of my meds and take them twice daily as ordered. I feed Sophie three times daily. I go to physical therapy twice a week and am pretty wiped out by the time I’m done. I usually have a few doctor appointments each month that I have to make. I’ve gotten to the point where I can make quick and simple meals for myself as long as I remain in the kitchen.

Cleaning is a hassle because I can only do a little at a time before I need a break. I do bits and pieces otherwise it would take me days. I spend some of my time with my online support group and blogger friends. They’ve kept me going through some of my roughest times. I’m hoping to meet more of them very soon.

15.  What are the biggest challenges that you face in regard to disability?  Wow, I have a few. I’m sure I’ve mentioned some of them in previous posts. The biggest challenge in my eyes is my inability to drive. It’s extremely frustrating for me. Luckily I haven’t had any seizures since last summer so I’m hopeful that my neurologist will finally clear me to drive again, so I can practice. It’ll be four years in September since I’ve been behind the wheel of a car. I’m due.

Another challenge I face is getting people to take me seriously and not talk down to me like I’m slow or stupid. I tend to get overwhelmed in stressful situations, but I try letting people know in advance when I call that I sometimes have a speech impairment when I’m upset. I stutter and sometimes I cry. This is especially true when I’m calling about something IMPORTANT. I’ll save the story for an upcoming question that will explain it perfectly.

That’s about all I have for today all. Have a great day!