Category Archives: EDS & Hypermobility Spectrum



My Diagnosis Experience

Exert from Chapter Three in my Book,

“Walk With Me My MS Journey” © 2010

By JD Author, Reporter-Journalist

There I sat in the neurologist’s office, nervous as hell, feeling like a cow set for slaughter, trying to soak in the words the doctor had just spoken to me. I knew that something was going on inside my head, but just was not sure what.

It started with headaches almost daily that had progressed into migraines nearly 2 times a week. I was having strange numbness and loss of feeling in my feet and hands.  I would have moments where I would lose almost all of my vision for spans of time, and it was beginning to scare me.  I knew I had to get answers before it got any worse.

I was not prepared for what I was about to hear. Then he told me what they had found. I could not seem to grasp or absorb it, so I asked him to repeat it again.  He stated calmly, “You need to stop working.  We need to open up your skull and upper spinal cord and expand your spine and cerebral cortex that is being crushed slowly due to lack of adequate room for spinal fluid flow”.  At least one of us was calm, I felt like I was ready to explode at the seams.

The first words that flew out of my mouth were, “are you kidding? Cut what? Do I look like a hamster you can experiment on?”  Then he explained it was a condition where evidently the bones in my spine and skull stopped growing before my cerebral cortex and spinal cord did and eventually over the years the lack of space had taken its toll.  I now knew the cause of the repeated migraines I had suffered for close to two decades.  I had a size seven innards stuffed in a size six frame.

Now there were decisions to make.  I was told I can have the surgery real soon or risk the possibility of eventually becoming paralyzed.  The surgery itself was risky.  I thought to myself, well do I have the surgery and risk dying in the operating room, and being asleep and not knowing it, or do I opt to not have surgery and die suffering?

It was a tough decision either way, because at that time I was not married, and the mother of four teenagers that really had no one else but me or my boyfriend to depend on.  No family was available to take on the commitment of raising my kids for me.  They couldn’t return to their biological father, his parental rights were terminated years before for in-discretionary reasons.

One month after hearing the news I lay in pre-op listening to a nurse telling my close friends and boyfriend that there is a risk that I may not make it out of surgery.  It was delicate and risky to cut into the brain stem and spinal cord.  They gave me a mild relaxer and told me there would be a few hours delay due to an emergency surgery.  I laid there doubting my decision, feeling fear, praying to God to help me get through it ok or survive at least long enough to watch all my kids graduate from high school.

My friends tried to comfort me, but as time passed the calming drugs wore off and I began to get very restless and agitated.  I started to try and get off the gurney and haul ass out of there.  Where would I escape to?  I was donned in a fashionable hospital gown, ass hanging in the wind, barefoot and dizzy.  The nurse standing there reminded me of some guru, ball-breaker, sporting a long needled syringe, and said it was time for me to go to sleep and it would all be over soon.

At that moment I definitely felt as if I had just stepped onto the screen of some “b” rated black and white horror flick.  There was never a stronger urge to definitely be walking in someone else’s shoes, whether they fit or not.

I woke up in the intensive care unit feeling like I was laying on something that felt like cold steel, I was totally unable to move.  Panic set in.  “Was this the morgue?”  “Am I dead and don’t know it?”  I tried desperately to move and see where I was.  All I could see was the light above me, and I could hear the sounds of voices in the distance.

I yelled, “help… someone help me”.  A nurse came rushing in and told me not to yell.  I of course, reassured now by her reply, knew I was alive, and snapped back quite curtly, “it would be nice if I were not freezing to death laying here unable to move”.  She smiled at me and explained that I would be able to move when they removed the steel support plate from under me and the paralytic drugs they had to use during surgery wore off.

Then of course she covered me up with warm blankets, told me to buzz my button if I needed anything, and bailed out leaving me with the call button hanging above my head, and out of reach.  I thought to myself, damn karma is a bitch.

Within two days I found myself ushered out of the hospital in a wheelchair, and home to start my recovery.  I had an HMO, God forbid I overstay my welcome!  I went home barely able to move about.  I could not even manage to sit up or stand without help, let alone find my way down the hallway 15 feet to use the bathroom on my own.  Thank God for good girlfriends!

My great friend Tammy Andrews came to stay with me for a few days. She helped me out a lot.  She cooked, cleaned and kept an eye on my teens.  I knew they said it would be a long recovery, but I had to get back to my routine, I had my kids to look after, places to go, things to do, a life to live.

A week later, stumbling, klutzy, and resembling a toddler taking baby steps, I made my way back to being a mom.  What I thought was a road to a new beginning at that time I did not know would be the start of many hard roads ahead medically.

The surgery was the easy part and the harder challenges were to come.  Especially after the news that the surgery was not very successful and there was no other surgery that could change anything or alter the medical concerns soon to follow.

A copy of my book is available @WALK WITH ME

©Copyright protected 2015: NWU Local 1981

©IAPP Author/Journalist   Press ID # 1007490467

Riding the Roller Coaster called MS

Riding the Roller Coaster called MS
Life is About Living… Not Waiting Around to Die
Author, Reporter-Journalist

     There is no mistaking the fact that Multiple Sclerosis can be a roller coaster, and speaking from experience, it can be one hell of a ride! It is learning to accept the challenges and educate yourself on what works best for you as an individual, and not feel pressured to make choices based on the opinions of others. Remember that this journey in your life is yours to travel and that everyone else is just along for the ride.

      Learning to “strap yourself in” on this roller coaster, means, you need to start educating yourself on how to make choices in your lifestyle and treatment that benefit the quality of your life. Although your family may want you to try all kinds of medications and therapies that are meant to benefit or prolong the progression of the disease, but for some, the adverse effects can be quite harsh. Good medical care can lead to creating a treatment plan personalized for your specific needs. Remember to focus on what is most important to you. Some medications have been shown to slow the progression, and some have side effects that can create other medical issues debilitating in themselves. Always take into consideration that sometimes the quantity of life is meaningless without quality. Let’s take a look at a few of the most important things you need to remember when first diagnosed or when considering treatment and care.


First and foremost, try to find a good primary care physician that you feel comfortable enough with that you can be open and honest. Sometimes we find it difficult to be open with our physicians when it comes to matters of a personal nature. There are a vast majority of symptoms related to MS, some you may experience and some you may not. With good communication, you should be able to share with your doctor concerns such as any complications or issues related to sexual function, bladder control, forgetfulness, depression and stress. If it weighs on your mind, it affects your health.

     Medications, Vitamins, and healthy dietary choices play an important role in your future. Research has shown that some medications such as Avonex®, Betaseone®, Copaxone®, to name a few of the many out there, can be beneficial in slowing the progression of the disease. However, many have also tried the medications and found themselves requiring many other secondary medications to counteract the harsh effects or other underlying conditions they create.

          Vitamins, minerals, good nutrition can play an important role as well. Personally I have opted to not take the interfeuron, as for me it created a vicious cycle of multiple drugs and a very poor quality of life. I reacted poorly to the interfeuron, and by the time several months had passed, I was on 12 medications, barely able to breathe, unable to walk without aid, and mainly grounded to a wheelchair, waiting to die. Then I found a wonderful physician, and my life changed. He listened. We slowly weaned me off the medications and I started living my life by my rules.
I now take vitamins and minerals to enhance what little immune system I have, as we all know MS is an auto-immune disease, and needs a little immune boost. I make healthier food choices, and do still succumb to tasty temptations on occasion. I just pay for it later.

Secondly, don’t stop doing what you love to do, just modify how you do it. Yes, MS may sap the energy out of you like a tire loses air when you run through a pothole in Kansas City, and you may feel like limiting your activity, but it is important to keep moving. Daily activity and exercise within your capabilities will improve your overall health, mood and stamina. It is also very beneficial in helping to manage MS symptoms like weakness, fatigue, and muscle tightness.

      Be sure to talk with your doctor and if needed get a referral for a physical therapy and occupational therapy evaluation, so you can find an exercise and activity plan that will coincide with your physical and medical capabilities.
When activities you love become more difficult, and at times they may, find ways to continue them, just modify how they are done.

     One of my favorite things is to play outside in the dirt with my three year old grandson with his trucks. On days when crawling around outside is too painful for me, I throw an old sheet over my bed. I let him drag his trucks on he bed (of course we make sure they are cleaned up a bit), and we use cotton balls and foam shapes to haul around and dump or pickup. Sometimes we have even used cookies and pretzels, with a few haulers and dump trucks I purchased at a dollar store just for these occasions. He finds it just as much fun, I enjoy the time with him, and avoid being miserable from pain.

     Another time, my grown kids and I wanted to keep up our annual winter tradition of building a huge snow fort in the yard. The snow was plentiful, as well as my stiffness and spasticity. That winter, instead of building the snow fort, I made hot cocoa and took pictures from the window and cheered my son on. When the fort was finished, donned in loads of warm clothing, I was assisted out to the fort and climbed in it and shared hot cocoa with him. I smiled when he said to me “we made an awesome fort together mom, if you did not keep me warm with hot cocoa, I couldn’t have finished it”. So do not give up, modify! Be creative, use your imagination and you will find, wherever you have the will, you can find a way.


     Never let stress get the best of you. MS can be difficult and unpredictable, just like stress. We cannot always plan ahead for the unknown. The best way to deal with stress is to learn better ways to control how you respond to it. A good way to relieve stress is by doing yoga, if your body is capable, practicing meditation, exercise, and positive thinking.

     Spending time with family and enjoying activities together can relieve stress as well, as long as they are not they are not the cause of your stress. I have found that some support groups work well, since the majority of my stress is family related. In some circumstances, this may be the case. Your family wants you to take it easy and not overwork yourself when doing for others or yourself, if it conflicts with that demands they put on you. You know your own body and your personal limits; you create the rules, not them.
MS can be a walk in the park for few, for other’s it can make mobility difficult and at times almost impossible. It can be an emotional battle for some people when it comes to using any mobility aid when needed. To use a cane, a walker, or a wheelchair, to some feels like a resignation to their condition. Some feel it is a sign of giving up, or a weakness in the ability to cope with the changes. I do understand this. I found that in my most difficult times with mobility, my friends all seem to quit inviting me to do things with them or ignore me altogether. Other times friends have voiced their opinions in an insensitive manner reflective of what they really feel about persons with disabilities.

     An example of that is when I invited a friend of mine, who has limited walking capabilities due to a medical issue of her own, to go to the zoo with me. She stated she could not because of walking and I explained I had a scooter she could use, and that it would be great to get out and enjoy a warm day together. Her response was “there is no way I am using a scooter or wheelchair, I am not a crippled or old.” Well that let me know how she felt about persons with disabilities being excluded from having a normal life and when it comes to days when I want to be active and am dependent on assistance, I won’t be calling them to go have some modified fun.

         Using any mobility aid is not a sign of defeat or giving in. It is a means of maximizing your abilities. They help get you to where you need to go, and when you get there, you have less expended energy and can be more active once you get to your destination. It is no fun to take all your energy getting somewhere only to be too tired to participate.


     Plan ahead of time for what may be needed in the future. Don’t wait until you are struggling to make small adaptations in your home, to accommodate for future needs with MS. By making small modifications in advance, you won’t be hit with the unexpected later. It can save you energy, avoid falls and keep you more independent. Simple things like handrails on stairways, better lighting so you don’t miss seeing things and trip, non-skid floors, shower grab bars and easy to reach storage.

     A good way to evaluate what you may need down the road is to speak with an occupational therapist for personalized suggestions. Taking time to do it now will cut down on the impact and expense of trying to get it all done when the time comes that it is a necessity and can help unforeseen accidents now when you become unstable when mobile. My bathroom handrail that extends the full length of the main bathroom will be there for days when I am unsteady on my feet, for now, it is an awesome wooden towel rack, lengthy enough to hold everyone’s towels so they don’t wind up on the floor!


     Patience! Have a lot of patience with yourself, and with your family learning to understand your needs as well. Educate yourself and involve those family members that are supportive. Maintain good medical care and do your research on treatment plans that work best for you. MS is not a death sentence nor is it an indicator it is time to stop living life. Don’t settle for just existing.

     One more roller coaster experienced in the amusement park of life, is one more path leading to where we belong. When we have been diagnosed with a medical condition such as MS, for which there is no cure we often struggle in finding our place. How we look at each challenge determines our strengths or our weaknesses. Make the best of it. Make it count.

©Copyright protected 2013: JD NWU Local 1981

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Press ID # 1007490467