Scans Don’t Lie, Or Do They?

The pain kept ebbing and flowing.  Somedays there wasn’t any and then it would come on with such intensity.  I tried stretching but the pain didn’t subside.

Mike and I despised the mattress we bought seven years ago and decided it was time to get a new one.  I expected to wake up renewed and refreshed after the first night but was severely disappointed.  I gave it a few more days and still, nothing helped.

I made an appointment with a physical therapist hoping a few visits would relieve the pain and I could go on my merry way. The therapist evaluated my symptoms and asked me to do a few simple movements.  She worked with me in her office and gave me exercises to do at home.  But the pain kept getting worse, not better.

Mike suggested I make an appointment with an orthopedist who would be able to pinpoint the problem.  He should know since he has probably seen every orthopedist in our area due to ongoing knee issues. The doctor ordered an in-office x-ray and conducted a brief exam. He concluded herniated discs from the delivery of Middle Miss were most likely causing pain.  He mentioned a few therapy techniques which would help strengthen the muscles surrounding the discs and ordered an MRI to get a better picture of the spine and discs.

The follow-up appointment concluded the discs were the cause of the discomfort and he went over the options.  He then showed me a different view of my spine and casually pointed out the radiologist indicated I had less than normal fatty tissue for someone my age.  The causes for this were listed as smoker, anemic, or myelodysplastic syndrome.

He suggested I see my primary care doctor and have a complete blood panel to determine if anemia was causing this issue.  Once home, I looked up myelodysplastic syndrome and my heart dropped into my stomach.  I read the definition over multiple times and looked up every source I could find.  I could not believe what I read.

I joined a facebook group for those suffering from myelodysplastic syndrome and was troubled by the posts and information.  Thoughts of my blood and bone marrow failing entered my daily thoughts and invaded my dreams.  I had trouble sleeping and could not muster the strength to eat much either.  I managed to hold it together for Middle and Little Misses but Mike saw the worst of my fears.  I told him we needed to increase my life insurance before I had an official diagnosis.  I was consumed with thoughts of how he would handle my diagnosis as well as care for a ten-year-old and 20-year old with special needs.  Mike is a terrific husband and father but it is a lot for one person to manage without any family living nearby.  It would also be a huge adjustment to my girls.  My stomach was in knots and I couldn’t think beyond a day.

A few days later I had my first appointment with a new physical therapist and told her my concerns. She read the report and acknowledged she would be concerned as well and suggested I see an oncologist.

Last week I had an appointment with a new general practitioner and an oncologist.  The general practitioner calmly told me she thought seeing an oncologist was a great choice, however, did not think I needed to worry.  She explained her office would run blood work to confirm I didn’t have anemia and check my red and white blood cell numbers.  She continued to explain radiologists report any issue in to cover themselves against medical malpractice.  She reassured me but I still didn’t feel one hundred percent cleared.

Surprisingly, I was able to go through the rest of my day without obsessively thinking about my following day’s appointment.  The next morning, while showering, it dawned on me I had to walk into an oncologist’s office and learn my fate.  I couldn’t eat breakfast that morning. I managed to take two spoonfuls of yogurt before feeling like I was going to vomit.

The office was located in a building I was very familiar with since my OB/GYN had his office here when I first started seeing him over 23 years ago.  I didn’t feel the same excitement walking in as I did before.  I approached the door very tentatively preparing myself for what I would witness.  There were three patients talking loudly about their chemotherapy and radiation treatments and I surmised they all had breast cancer.  I was struck at the age of one young woman and overheard her say she was going to turn thirty at the end of the month.  She is way too young for such a diagnosis.  I felt horrible for her.  It made me think at least I was in mid-life dealing with a possible diagnosis.

Two nurses escorted me back and took my vitals and brought me to the examination room.  One was not very friendly and it appeared she was training the other who was much friendlier.  I wondered if the staff had to remain distant in order to protect themselves in the case of a terminal diagnosis.  She asked me a few questions and looked over the pages of information I completed online.  She then startled me when she inquired f I completed The Advance Directive.  I responded that I had not completed it and she made it clear I needed to do it immediately.  She handed me a paper copy and I shoved it into my purse.  Now, I was really worried.

My stomach flipped as I waited for the doctor.  She entered and I immediately liked her. The doctor immediately told me she knew why I was there and reassured me.  She continued to tell me that my general practitioner had faxed my blood counts and there wasn’t any indication of myelodysplastic syndrome or anemia.  She explained she would do a brief exam, run some bloodwork, and ask a few questions.  When the questions and exam were done she reassured me, again, that she did not suspect anything and reiterated radiologists report any and all possibilities in the report.  She also went on to say that many times shadows mimic something that is not there.  In other words, MRI scans were not fully accurate all the time.

My bloodwork results were immediate (funny how some medical offices can complete them so quickly).  She brought me back to her office and confidently told me my numbers were excellent.  She advised me to have yearly labwork and if I ever suspected anything I should call her office.

A HUGE weight came off my shoulders.  The stress of the past two weeks slipped away and was replaced by adrenaline followed by exhaustion.  All the restless nights caught up with me.

Since Friday, I am trying to be more aware of all the blessings in my life.  I have also taken this experience as a reminder that I need to do more self-care for myself.  I followed it up with a sound bath meditation.

I hope all of you are taking care of yourselves as well.  We all need to practice more self-care.

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Group Dynamics

We all want to be part of some larger ideal.  We are looking for our tribe.  That is why we choose to live in communities or select one particular church to join, or a school.  But what happens when the group we have chosen to call our own is not serving us in the way we envisioned.  Or what if one particular member is not adhering to the group “unwritten rule”?

Great things in business are never done by one person. They're done by a team of people. - Steve Jobs

According to Wikipedia group dynamics is defined as “a system of behaviors and psychological processes occurring within a social group or between social groups”.  I have always felt that groups are made of people who either have a common interest, desire, and/or hobby.  I have belonged to many during my lifetime and some have proven very successful while others have fallen away over time due to lack of communication, lives going into different directions or lack of cohesiveness.

One thing I have always looked for in a group is support.  This support could take on many different shapes such as emotional, encouragement, and helpful.  One thing I have always said that could derail these communities is a form of “backstabbing”.  What do I mean by this?  Well, if one group member has a personal motive and refuses to embrace other ideas or values then this will cause the group to splinter.  If a member talks negatively about others the members will splinter into subgroups.

 

I have always felt that groups are there to support one another through hardships and boast each other during the good times.

So what happens when there is a group member who consistently does not encourage or support another?  How does the group survive?  How should members address the situation?

calvin_arguing

I am dealing with this issue right now and am at a loss.  I am not a confrontational person by nature.  I have fought fiercely for my children but when it comes to myself I usually back off.  My instinct is to retreat and not say anything.  Eventually easing out of the group. However, this time it feels different.  I do not like how this group is being splintered especially when we all have a single mission.  I don’t want to talk to others and get them involved since I don’t want to be talking about someone, however, I don’t know how to handle this issue.

How would you handle it?

 

 

 

 

The Truth Eventually Reveals Itself

maxresdefaultI kept hearing stories about facebook friends who had DNA testing to determine their ancestry and found it fascinating.  So many were finding little traces of unknown heritage that had somehow never been spoken through generations of stories.  I was HOOKED!

At Christmas, Mike gave me a kit as a gift.  I was so excited!  I couldn’t wait to complete it and send it off for processing.  For those of you unfamiliar with these, a small tube is included where you spit some saliva.  Seal it and complete the accompanying paperwork. All of these are placed in a postage paid envelope and mailed it to the lab.  I used Ancestry.com but there are a number of similar services that conduct the same or similar tests.

I received periodic updates explaining where my tests were during the process and as it so happened this was a popular holiday gift so there was more of a back log than usual.

Approximately six weeks later I received an email late at night detailing my results.  I must have been in shock because when I look back on my reaction it was one of disbelief.  I had always believed that I was 50 percent Swedish since my paternal grandparents immigrated from Sweden and 25 percent Irish and 25 percent English from my mother’s parents who were also immigrants.

The following day I sent Mike a text as he was travelling for work. I included the results and he immediately responded asking if I could talk. I could immediately detect from his tone of voice that he was quite shocked.  He wanted to know what I thought before saying anything else.  I told him that apparently the man I always thought was my biological father was, in fact, NOT. My results indicated that I am 49 percent Irish and 48 percent English.  The remaining 3 percent was a mix of others but not a drop of Swedish.

The thoughts that circulated through my head were so numerous and yet I never once doubted the results.  In fact, a lot of things became clearer. When my father passed away, 6 years after my mother, I had the unfortunate task of cleaning out their house.  While going through his dresser I found a manila envelope containing a number of documents.  One of these was my ‘parents’ marriage certificate. I read it at least 10 times before calling Mike in to look at it.  They DID NOT get married until I was 24 years old! There was also a letter from an attorney stating that they lived as husband and wife from 1964 until April 1989 believing that a common law marriage was legal.  I am sure you can imagine the shock!

So, when I found out the man who I always thought was my father, was not, I did not experience the same level of shock that would be expected . Since my brother’s birthday was the following day I decided to call him and ask him what he knew.  He is 15 years older than me.  His father walked out when he was about 2 years old and my mother and he never heard from him again. Though we are technically half siblings I never referred to him as such and have always felt that he is my brother whether half or not.  I was hoping his memory would help explain what happened.  There was, and still is, a part of me that wonders if he knew or suspected about this all these years.

When I told him my news he sounded surprised. I asked if he remembered anyone in our mother’s life prior to my birth.  There was some silence and he asked if  he could try to think about it to jog his memory since this all occurred a long time ago.

The following day he called me and relayed that yes our mother was involved with someone prior to “marrying” my father.  He explained that my mother and “father” had dated for quite a while and one day she told him that they would no longer see Lenny.  We were always told to not ask too many questions so he didn’t.  My mother dated some men and there was one she was dating more seriously than others.  My brother would spend a lot of weekends at our aunt’s home and when he returned one Sunday evening my mother explained that she & Lenny got married.  A few days later they told him that they were moving to another state because she was pregnant and they needed a house with more space.

He further explained that once the move occurred our mother became a very different person.  She no longer went out every weekend.  She stopped working since she was now “married”.  She didn’t see her extended family as much and as the years went on saw them less and less.

I have had this information for a while now and have gone through a lot of emotions.  I started out very confused which turned to anger and then to empathy.  I feel sorry for my mother in a lot of ways.  She had to hide two large secrets and she most likely went through her life terrified that someone would uncover these.  I can not imagine living with so much secrecy.  What an incredible burden.

On the other hand, why didn’t she ever tell me the truth?  There are medical issues I may need to be aware of.  I was an adult with my own family when my mother passed away so she had plenty of opportunity to come clean. I have also wondered why my father never told me the truth once my mother passed away.  I am convinced he knew!

This information does solve a few questions that I have wrestled to understand.  I never felt as though I fit in and wondered what was “missing”.  My mother always held others back and would never let anyone get to know her probably in fear that her secret would be revealed.  I had an eye condition when I was four years old (strabismus-https://www.healthline.com/health/eye-muscle-repair) which is genetic yet no one in either family ever experienced it.  Middle miss also was diagnosed with strabismus at three and had surgery to correct it at four, just like me.  After a miscarriage I had some blood work evaluated and discovered that I had a clotting disorder (www.healthline.com/health/von-willebrand-disease).  The doctors explained that you inherit the gene from a parent.  My mother was deceased but I asked my father and he immediately got very angry with me.  He refused to discuss it and told me he had no idea what I was talking about.

I have reconnected with some of my cousins since this started which I am really grateful. I wish my parents had explained all of this to me prior to their deaths so I could understand what happened and listen to the reasons for their secrets.  I would have had the opportunity to grieve and heal with them supporting me.  The piece I hope everyone takes away from this story is that it is so important to tell the truth whenever possible.  Lies fester and build and hurt so many.  The truth is always the best way!

 

 

 

 

 

 

 

Graduation Day

When I think of a graduation I think pomp and circumstance, of course, graduation caps and gowns, an end, and, of course, a new beginning.

Middle Miss walked down the “ramp” and received her high school diploma a few weeks ago.  There were so many emotions and thoughts  going through me in such a quick amount of time.

Obviously, we were so very proud of all she had been able to accomplish.  When she was a little over three years old we were in a horrific car accident where she was very close to death, probably as close as one can get.  A result of this event is she has a severe traumatic brain injury and has endured numerous therapies, doctors, evaluations, IEP meetings, and much more over the last 15 and a half years.  While still in a coma the doctors told us that they did not know if she would ever wake up, and if she did, what the outcome would be. So to arrive at high school graduation at the age of 18 was nothing short of a miracle.

Of course, part of me felt that Mike and I, as her parents, should also receive a diploma since we worked for it by advocating and moving her towards the “finish line”.

The biggest question hanging over our heads is “What’s next?”  This is the question that has hung over her for the last two years since by junior year of high school most students know what they would like to do or how they want to pursue it.  Unfortunately, she is not one of them.

We don’t know if she will be able to earn a college degree. She is starting at community college and will take 2 classes along with a 1 credit college success class for 8 weeks.  She will spend 2 days on campus.  We advised her to take it slow and see how she does. The transportation hangs over us as well. Unlike many other 18 year olds she does not drive which is a further impediment to independence.

I am trying not to worry about all the details yet and bask in her enormous rite of passage which she deserves more than anyone else!
 

 

 

One of the Hardest

I am about to bear it all right now.  One of the toughest things I have had to deal with is loneliness.  How could I be lonely if I live with one cat, one dog, three children, and one husband?  Well, that’s a great question.  I am not deprived of contact with human beings or animals; I AM LONELY!

According to Wikpedia,  “loneliness is a complex and usually unpleasant emotional response to isolation. Loneliness typically includes anxious feelings about a lack of connection or communication with other beings, both in the present and extending into the future. As such, loneliness can be felt even when surrounded by other people. The causes of loneliness are varied and include social, mental, emotional, or even physical factors. Research has shown that loneliness is prevalent throughout society, including people in marriages, relationships, families, veterans, and those with successful careers.”

I have felt this way on and off all of my life but it has taken me a very long time to recognize it or define the feeling.  It hits me very hard when I try to have a conversation with someone and tell them about Middle Miss and some of her disappointments or how her life is shaping up and they have nothing to offer.  Instead of saying nothing, or at the very least, “I am sorry, this sucks, etc.”, they turn the subject around to a friend’s  high school son who had numerous ACL injuries and his “career” is over.  Seriously?  That’s all you can come up with?  Is that supposed to make me feel better?  That young man still has a great future ahead of him.  He can go on to a four year college if he chooses and live an independent life.  A hurt knee won’t jeopardize his education.

These are probably the times I feel the most lonely.  No one else has empathy for our situation.  No one else feels the pain I feel.  As this keeps occurring especially during this graduation season, I feel it even more.

Middle Miss’ future was stolen from her while riding in the back seat, strapped into her five point harness car seat, singing along to a Blues Clues CD on the way to her sister’s Nutcracker rehearsal.  Her future will never, ever be the same.  As the surgeon in the hospital said to us the morning after the accident, “The little girl you had before will never return”.

One of the Hardest

I am about to bear it all right now.  One of the toughest things I have had to deal with is loneliness.  How could I be lonely if I live with one cat, one dog, three children, and one husband?  Well, that’s a great question.  I am not deprived of contact with human beings or animals; I AM LONELY!

According to Wikpedia,  “loneliness is a complex and usually unpleasant emotional response to isolation. Loneliness typically includes anxious feelings about a lack of connection or communication with other beings, both in the present and extending into the future. As such, loneliness can be felt even when surrounded by other people. The causes of loneliness are varied and include social, mental, emotional, or even physical factors. Research has shown that loneliness is prevalent throughout society, including people in marriages, relationships, families, veterans, and those with successful careers.”

I have felt this way on and off all of my life but it has taken me a very long time to recognize it or define the feeling.  It hits me very hard when I try to have a conversation with someone and tell them about Middle Miss and some of her disappointments or how her life is shaping up and they have nothing to offer.  Instead of saying nothing, or at the very least, “I am sorry, this sucks, etc.”, they turn the subject around to a friend’s  high school son who had numerous ACL injuries and his “career” is over.  Seriously?  That’s all you can come up with?  Is that supposed to make me feel better?  That young man still has a great future ahead of him.  He can go on to a four year college if he chooses and live an independent life.  A hurt knee won’t jeopardize his education.

These are probably the times I feel the most lonely.  No one else has empathy for our situation.  No one else feels the pain I feel.  As this keeps occurring especially during this graduation season, I feel it even more.

Middle Miss’ future was stolen from her while riding in the back seat, strapped into her five point harness car seat, singing along to a Blues Clues CD on the way to her sister’s Nutcracker rehearsal.  Her future will never, ever be the same.  As the surgeon in the hospital said to us the morning after the accident, “The little girl you had before will never return”.

Speaking Her Truth

As some of you may or may not know March is Brain Injury Awareness Month and this past week it was Brain Injury Awareness Day on Capitol Hill.  Congressman Bill Pascrell of the great state of New Jersey founded The Brain Injury Task Force in 2000 and he continues to co-chair it along with Congressman Thomas Rooney of Florida.  The Brain Injury Association of America sponsors this event with a vendor fair in the morning, a panel of speakers in the afternoon, and a reception in the early evening.  The staff is also on hand to coordinate lobbying efforts by attendees and they can help coordinate these visits.

I joined the Brain Injury Council six months ago just as the planning for this got underway.  It had already been decided that the theme would be Pediatric Brain Injury which seemed to be a perfect “fit” for my interests.  I have only attended the event once which was last year since it takes a lot of coordination with my family and it is a VERY LONG day traveling to the Capitol and meeting with representatives and there is A LOT of walking.

Middle Miss was asked if she would like to speak on the panel since the organizers were trying to find someone who had a brain injury during their childhood and was in the process of transitioning from high school to adulthood.  Her name came to the attention of the organizers through the Executive Director of the Brain Injury Association of Virginia.  I sit on the board and she was aware that Middle Miss had attended the Youth Leadership Forum this past summer.

Middle Miss was asked to speak about her journey as well as touch on the services she had received over the years including what supports she will continue to need as she move on from public school.  We kept reminding her of the date and as each week went by I would ask her if the speech was written.  Imagine our surprise when the Saturday prior to the event the speech hadn’t been started.  She worked on it all weekend and as you can imagine this involved a lot of grumbling, feet stomping, huffy breaths, and breaks.  Finally, the evening before the event we had a speech!  Nothing like waiting until the ninth hour.

The morning of the event we were all racing around since we had to leave the house right after little Miss got on the bus at 7:20 a.m.  As anyone with a teenage girl knows they are rarely on time to leave the house and Middle Miss is notorious for changing her outfit as we are about to leave.  So it shouldn’t have been much of a surprise when she had to change.

The weather was quite brisk this morning and as we walked up to the Capitol and entered the Rayburn House Office Building we were quite wind blown.  Middle Miss chose to attend the first Congressional visit of the day along with some Virginia state employees and the Government Affairs Director of the Brain Injury Association.  Following this visit, her anxiety began to increase.  We walked around the very crowded and loud vendor fair and attempted to speak with a few people but she had to leave the area as it was too overwhelming and stimulating of an environment with the lighting, noise, high ceilings and wall to wall people.  Anyone requiring the use of a wheelchair or cane would never have been able to navigate this area.

Finally, the time to head to the room for the panel arrived and we attempted to get her acclimated to the environment nice and early, however, our attempts were thwarted when we all had to exit the room so staff could take away the tables and set the room up for the panel.  Once this all had been completed we entered the room along with the audience members therefore not giving Middle Miss time to acclimate her herself.  What do they say about the best-laid plans?

The moderator who I described to her as a teddy bear proved me right; he really took care of her by making sure she was comfortable and rearranging the speakers so Middle Miss would go second in the lineup of five.  He later explained that he did this on purpose knowing that her story would prove to be the most impactful since she was the only survivor speaking.  She was also seated next to the kindest gentleman anyone would ever meet.  A psychiatrist with the Department of Defense and a career military man he made our girl feel so comfortable which we were forever grateful.

I am not speaking as a proud mama, which of course I was, but she totally ROCKED that room.  She spoke so clearly and eloquently and with so much heart and authenticity.  Her talk was at times sad, devastating, raw, and always truthful.  As she finished we were shocked and awed to see that the audience, us included, gave her a standing ovation.  I could not believe the overwhelming surge of pride, elation, sadness, and awe that came over me all at once.  Here was this beautiful girl of mine, once clinging to the threads of life, speaking in front of one hundred plus people in the Rayburn House Building.  Validation does not come any better than that.  As we all returned to our seats the moderator mentioned that her two proud parents were sitting in the front and the woman next to me turned and said, “that is your daughter, oh my gosh, she made me cry, what a beautiful young lady she is and so brave to share her story here.”

Like I said, validation and the feeling that all of our hard work was beginning to pay off was overwhelming.image-1054_westfrontwithtulipshorizontal-4149