The politics of the day.

     As most of you may know, my political affiliation leans strongly to the left, more liberal side.  Although I do not believe in everything for nothing, I do believe there are many things we can do in this country that will improve the lives of so many Americans.  Some of those things include free and equal healthcare for all Americans, much lower prescription costs and total equality for ALL.
     Here is what I have learned from traveling to countries with healthcare for all.  Sure, the people of those countries pay more in taxes to cover the costs but think of what they receive in return.  In those countries, all citizens are paid a living wage, ever the lowly janitors and street cleaners.   And all receive the same healthcare.  Seems easy, right?  There are so many other things that the citizens other wealthy countries receive for their taxes like good roads, terrific public transportation, etc.

    Here is the US, things are obviously different.  Politicians covet the dollar more than they covet the average American.  And god forbid they raise taxes on those who can afford to pay more.  I keep hearing that the Democrats do nothing but raise taxes but I see the Republicans spending like crazy and then lowering taxes on the rich.  Does this make sense to you?  Me either.

    When it comes to healthcare, US citizens are basically on their own.  There are government options for low income and senior citizens but certain politicians would rather do away with all that and so far, I have not heard of any replacements for that healthcare.  And still, if those politicians have their way, there are things like "pre-existing conditions" to consider.  

    My opinion, raise taxes on those making more than $400,000 per year, close cooperate tax loop holes and give every American healthcare with options to purchase supplemental insurance.  

    Soon we will be completing ballots for government officials from the President on down.  I wonder if there is a candidate who might agree with me?!?

    So remember, vote like your health (and mine) depended on it!!!

Here I go again

     It has been a while since my last post and so I have decided to redo my Blog's look and start over  with new ideas and themes.
     What I plan are posts with random thoughts and ideas.  I will plan on a theme for each post and will try to include photos that match the theme.  If all goes as planned, I will do a minimum of one post per week.  Topics will range from politics to my life and travels to what ever is on my mind.  The blog's emotions will run from happy to sad, pleased to angry.  And as always, I appreciate feedback and comments. 

     So, sit back, relax and put your reading glasses on.  Ready?  Set?  Here we go again!

What I have learned about depression

     I know it has (again) been a while since I last posted.  I really have no idea if anyone is reading these or not but it does help me to get things off my chest.
     Recently I received a comment on Facebook that said I seemed to always be "negative" in what I posted.  And I discovered that it was true, I was mostly negative with a few cute cat videos interspersed to lighten things up.  So, I decided it would be best to write down the reasons why I think I am mostly negative and offer advice to those who care about someone with depression. 
     First, let me start by saying that clinical depression is not a phase or a state of mind.  It is a real problem with real options for treatment.  Web MD says " A constant sense of hopelessness and despair is a sign you may have major depression, also known as clinical depression."  There are many causes of depression including environment, chemical imbalance, other health problems and in some cases, clinical depression is inherited. In my case, depression runs in my mother's side of the family.  Mom was diagnosed with depression and was put on medications.  Since she had no real follow up at Mayo, her depression got worse as she faded into dementia.  My mom's biological mother, we discovered, was put into a "mental hospital" and that was the reason mom and most of her siblings were put up for adoption.  Though we don't know why she was institutionalized, I wonder if depression was at least part of the cause.  So, I do have a family history of depression.
     I am currently being treated for depression in different ways.  I am on antidepressants, at least a couple, I see a therapist and I see a psychiatrist who helps with medication regulation..  Combined, my depression is mostly controlled.  However, "mostly" is a key word.  In my case it will probably take most of my energy to just keep me at an even keel.  There will be times when my depression will be bad and other times that I will seen "normal".
     I have looked back to see if I could figure out why my depression has become more obvious lately.  I think this current phase started in November 2016.  First, the election left me wondering and worrying about my marriage, my healthcare, my freedoms and other important aspects of staying alive.  I was frightened by what the country was doing to itself.  Then in the midst of all this, I had to rush to my mom's side as her life was fading away.  She died three days after the election.  Even though her life had been pretty much nonexistent the last years of her life, I still felt a great loss.  Both these events, though not related to each other, put me in a downward spiral.  The facts that I have not been feeling well for a long time and treatments come at a cost have not helped.  Coming back up has been a long and ongoing process.
     Over the years I have learned, both from my own depression and my husband's, that there are things that friends and family can do and things they probably should not do to help a person with depression.  These can be different in every person with depression so I will talk about my experiences only.
  Let me start with the list of please don't do.  #1 - I often hear, "get over it".  When I hear that or something like it, I feel ashamed and guilty that I cannot "get over it". It makes me feel as if the depression is my fault.  #2 - Please do not offer your advise unless asked.  I realize that you are offering suggestions because you care but I probably have heard it all thousands of times in the past.  It didn't help then and won't help now.  Don't tell me that I should get out more, that I need to find things to cheer me up.  Yes, I know that my depression often makes me want to stay in the apartment and not have any social interaction but the more you tell me what you think I should do, the more I will not do it.  #3 - Do not compare me to someone you know who has depression.  Depression can manifest itself with very different  symptoms in different people.  Knowing that someone else did this or that and is much better now just reinforces the feeling of failure and shame.  #4 - Please don't be silent when you hear that I suffer from depression.  Often when I tell people I have been diagnosed with depression they shut down, they seem to ignore that part of me.  I know that talking about depression can be just like talking about HIV/AIDS, it is an uncomfortable topic.  You know it exists but if you don't talk about it you think maybe it will go away or not effect you.  That only makes me feel like you don't care.
     So, what can you do to help?  The one and only suggestion that I can think of is to please let me know that you are there.  Let me know that you will support me.  And if I need to talk, a shoulder to cry on, a hug or just some kind words, let me know that you will be available to offer your assistance.  Sometimes all I really need to hear is that someone out there really cares about me, my depression, my AIDS diagnosis and all other aspects of my life that when put together, make me the complicated and complex person that I am.
     Bear with me, there will be days when all I post, say or do will seem very negative.  There will also be days when everything seems good, that I have my sense of humor back and I am looking forward to the rest of my life.  And most of all, thank you for caring.

Life goes on... and on... and..........

     It's amazing how quickly the past year and a half have gone.  A lot has changed since I last posted anything on my blog and yet, some things remain the same...
     After my mother was laid to rest, I sort of took shelter in the home.  I was not really interested in much that life had to offer although I tried to make the right noises to let people know that I was okay.  I was also very distraught by the fact that Washington DC had been taken over by those who seemed to be out to destroy the democracy that my great grandfather, father, uncles and brother fought to maintain.  All in all, I just couldn't be bothered by writing because I was sure that no one would be interested in hearing about my depressed and stressed state of mind.
     Stress came from many aspects of my life.  First, there was the stress of getting my mother's affairs in order.  Luckily, I had gotten much of that ready so finishing up was not too difficult. Then, not knowing what the current administration could or would do to my health insurance, my disability insurance and my social security.  I still really don't know.  And then there were the stress of not knowing what had happened to our country.  Again, I still really don't know.
     Breaks in the stress happened when Jim and I went on vacation.  As always, we left the worries and stress of life behind and traveled to new places and met many new friends.  But we always had to come home.  At least we could plan and look forward to our next adventure. 
     Then last year, about this time of year, we decided that it was time to look for a new place to live.  We decided that moving out of the house and into a senior living community would be the best plan for us for a number of reasons.  First, taking care of the house and yard had become more difficult for both of us.  It was no longer fun but had became a chore that neither of us wanted.  Second, we knew that our health was most likely going to decline as time passed and we wanted to be in a place where we could live out the rest of our lives without having to make decisions about another move.  An "age in place" kind of thing is what we wanted.  Third, living in south Minneapolis was no longer as safe for us as it once had been.  We wanted to put another layer of security between us and the craziness of the world.  We spent much of last summer and fall looking at places around the cities.  Finally we decided that The Rivers Senior Community in Burnsville was the best fit for us.  It's close to where we want to go, it is convenient for shopping, it has beautiful gardens and ponds and we can sit inside and watch nature without having to care for lawns and gardens.  Plus, we don't have to shovel snow!!  In November of last year we were notified that one of the two bedroom, two bathroom apartments had opened up so we decided to move.  We began the move in December and were in our new apartment by the middle of the month.  We were able to get the house cleaned out and fixed up and ready to go onto the market by February.  Luckily, the house sold very quickly and for more that the asking price.

In this photo our apartment is at the far right of the building, second floor.

 

     Since moving, stress levels had dropped considerably and my health has improved.  I realize that the outside world is still a mess but Jim and I are safer and happier here on our new home.  As a result, my lab tests have been great and my HIV is well under control.  I am now able to concentrate on my HIV Prevention Education and my political interests and work on getting myself back out into the world.  Watch out because now I am ready for a fight in both areas of my life!

Grief, part three - The ongoing state of my life

   Well, my mother's memorial service was this past Saturday.  I was surprised to find that it was more difficult for me than I thought it was going to be.  And afterword, it is still sorrowful and still extremely depressing.  Yet I have to say that throughout the process there were good moments too.
     The visitation and memorial were nice.  I was amazed at some of the people who took time out to come and pay their respects.  People who traveled from the Twin Cities, people who only knew mom through her time at the nursing home and didn't know the family, old friends of mine who were a big part of my young life and childhood in Rochester, family that had traveled far, etc.  It seemed to me that the best of people's personality showed at the time of my grief and mourning.  The memorial service was simple, each of the surviving children read a poem and my childhood friend, Reverend C. Nelson, gave a very nice talk about mom's life, her influence on others and the influences that shaped who she was.  I didn't feel terribly sad until the graveside service when I was forced to say my final goodbye.  There I shed a few tears and let go of my mother's physical being.
     It was after we returned home that the grief poured in and took over.  I received a notice that a wonderful friend from my childhood had made a donation to the Alzheimer's Association in my mother's name.  Suddenly I was overwhelmed with sadness.  I was surprised by the loving generosity shown and deeply saddened that I could not share this moment with my mother.  It was also then that I realized that the person who had always meant so much in my life was no longer there.  And even though the past few years had been difficult, at least I could always sit with her and hold her hand.  Now my mother's hand was gone. 
     And now a few days after the service, I am even more saddened by events that have angered, hurt and depressed me even more than ever before.  I feel as if those who should have understood what I was going through and how I was feeling did not understand or at least chose to ignore it.  I will not go into details here other than to say that now more then ever I wonder if all this is worth it.  I know that mother is at peace, I sometimes wish that I could be too.  I know that I will not do anything "drastic" but I also will not quickly get over the hurt.  Eventually, the pain will go away and maybe the depression will too.  My mother would not want me to hold the anger and I will not let the anger, pain and depression win.
     So now I am left with memories.  Memories that will keep my mother alive in my heart and will cheer me when I am sad and depressed.  Memories of my childhood, of happy times, of long talks, of gathering with family around the table for a wonderful home cooked meal, of holding my mother's hand.  And I will remember the memorial service, the wonderful friends and family that showed their love and support as I went through this painful period of grief.  And soon, I hope, the grief will be replaced with a calm knowledge that I did all I could for my mother and my reward was, and always will be, memories of my dear, sweet mother.
     So long mom.  Until I see your smile, your bright blue eyes and hold your hand, please know that I am okay.  Oh, and tell dad and the rest of the family with you that I miss them.

 

Oh, and one more thing, if you are so inclined, we would like to see donations made in the name of Ida E. Bandel go to the Alzheimer's Association.  

Please go to - alz.org to make your donation.

Thank You!

Grief, part two

     My dear mother passed from this life to the next on Friday, November 11, 2016 at around 9:00 am.  I arrived to see her at about 9:05 and was the one who found that she had gone.  The nurse had been in to give mom medication about 10 minutes before I arrived and mom was comfortable and breathing calmly and without stress.  Then, between the nurse visit and my arrival, she decided it was time to go,
     Since my mother's death I have been struggling with exactly how I feel.  I seem to be split into many parts, my version of grief.  One part of me is relieved that she is no longer suffering.  Dementia had robbed her of so much.  One part of me is happy that I was able to spend time with her the last few days before she left us.  I was able to hold her hand one last time.  A part of me feels so excited that mom has finally been reunited with the love of her life, my father.  Mom died just two days after what would have been my parents' 77th anniversary.  Then there is the part of me that feels extremely sad.  I have lost my mother.  I will no longer see her bright blue eyes and her warm smile.  I will not be able to sit quietly and hold her hand as we watch the world pass by.  I guess the sadness is gradually becoming the strongest of my feelings.
     My mother and I always shared a special relationship.  We always were happy when we were together.  We could talk for hours, often we did talk until late into the night.  We shared a love of art, music,, nature, animals, laughter and so much more.  Mom enjoyed teaching me things, for instance crocheting.  I remember once wanting a homemade afghan.  Instead of making one for me, she decided to teach me to crochet so that I could make my own.  I worked for abut a year and the result was not the greatest but not only did I have my afghan, I had the pride of making it myself.   I still have the afghan and it is a reminder of lessons taught by my mom.  Mom taught me to be proud of myself not only in her pride of me but in helping me to have the tools to be proud of what I could accomplish.  And I was proud of her and proud to be her son.  I won't say that we didn't have our disagreements, we certainly did, but they never strained our relationship.
    Today memorial plans were finalized, flowers were ordered and the headstone engraving was ordered and paid for.  Things went smoothly with my sister, brother and I seeming to know exactly what needed to be done and how to effortlessly accomplish the "to do: list.  Still, at times I felt as though I was on autopilot, not really there, not really saying the words that were coming out of my mouth.  I was glad that those we worked with were patient as I struggled to find the words that were close but seemed to be so hard to reach.  My nerves seemed to be on edge and I struggled (at times not very well) to restrain my temper.  I also had issues with exhaustion.  All, I think, were a result of my suppressed grief.    
    Now I grieve for all that has gone, for all that will no longer be.  I have not yet shed many tears but I know that they will come.  I will truly miss my mother as I do my father and all the other loved ones that have gone before.  And I grieve for the part of me that has been taken with the life of my mother.  A bit of sunshine is covered by the small cloud that is the death of my mom.
     Many words of comfort, love and support have already been flooding in.  I don't remember ever feeling that there were so many people who cared.  Even with my own illness and near death, the love and support came only from a few.  I can honestly say that the love and support I feel now is so very helpful and necessary for me to go on with my life in spite of my grief.  With love and support I know that I will make it through this fog, this cloudy day, and eventually the grief will be replaced with happy memories and pride in my parents, my family and my friends.  For now however, I will  grieve.

I Love You Mom

And I Always Will

Ida Elizabeth Bandel

Born August 28, 1918

Died November 11, 2016

Lived over 98 FABULOUS Years

  

     

Waves on the beach......... The watch goes on.....

    I am now alone with mom.  At the moment the only sound is from the oxygen machine that pumps in a steady rhythm, the sound reminding me of gentle waves coming onto a sandy beach.  I am  sitting next to mom's bed, holding her hand and watching her breath.  Her breathing is shallow and at times erratic but it goes on.
     As I sit here I can't help but think of the many times that mom sat with one of her children nursing her child back to health.   With five children, there were lots of colds, flues,  strep throats and other illnesses that gave mom concern.  I remember the many times she would sit with me, reading a book or singing to me until I drifted off to sleep.  Her loving care would get me through the night,  gently and sweetly making me feel as if I was her only priority, her only worry in the world.
     I also am reminded of the day I first saw mom after two major hospital stays and twice coming close to death,  I sat with mom at my sister's house and explained that the reason I had been so sick.  I had AIDS.  I had been worried about telling her because I had no idea how she would react.  Besides,  she was in her eighties and I wasn't sure if she even knew about HIV or AIDS.   I had no reason to worry.  Mom and I sat together on Joy's couch, just the two of us,  as I tearfully said the words,  "Mom, I have AIDS. "  Her reaction was swift and totally unexpected.   She put her arm around me,  held me tightly and said, "That's okay,  as long as you get better."  I asked if she understood what having AIDS meant.   She nodded and said that she understood a little about HIV/AIDS and what she didn't know,  she would learn.  Tears streamed down my face as mom silently held me in her loving arms.   And true to her word, when she got back home to Rochester, she immediately called and signed up for the Red Cross HIV Instructor course.  She ended up being the oldest in the state to take the course at that time.  That was the kind of mother she was,  always ready to do what was needed to help and support her children.    
     Now things have changed, the tables have turned and I am the caretaker.  I am now the one sitting by mom's bed.  So here I sit, holding her hand and talking about all the fun we used to have and all our shared memories.
     And I watch her breath.
                               And I listen to the oxygen machine.
                                                       And I remember..........

Grief....

     We each have had to face grief at different times in our lives and for different reasons.  We grieve for the loss of a loved one.  We grieve when our candidate loses the election.  We grieve when our favorite sports team doesn't win the big game.  We grieve at the change of seasons.  We even grieve for our lost youth and the memories of our childhood.  The list goes on...
     Today I face the grief of the loss of a parent.  I sit and watch and wait.  Mom still clings to what life she has left.  I watch and wait as I have a done for years as mom has been very slowly robbed of her memories, her independence, her speech and now her life.
     My grief is partly because, in mom's typical style, life is leaving her slowly.  I grieve for the happy times that from this time on, will only be memories.  I grieve for the wonderful (and LONG) talks that mom and I had.  I grieve for the vacations we used to take, mom and dad showed me the country and expanded my views of the world.  There are so many reasons that this process, although expected and a necessary part of life, causes me to grieve.
      Yet, my life will go on.  Tears will be shed.  My grief will be shared with others who love mom.  I will laugh at the fun we had.  I will continue to remember, to tell the stories of the happy times with my parents.  I will make sure that my mom will not be forgotten.  I will live with the values that my mom and dad passed onto me.  I will grieve but I will remember and slowly the grief will pass.  But most of all, I live the rest of my life with my parents watching over my shoulder, being proud of where I came from and who raised me to be the man I now am.  (for better or worse)  And I WILL make my parents proud!    

From Bad to Worse

     You know the old saying, "It can't get any worse"?  Well let me tell you that actually, it can.  Much worse.
     Last night I was trying not to watch the election return news because when I checked, I was shocked at the very depressing news.  Then, when I was about to go to bed and cry myself to sleep the phone rang.  It was about 2:00 AM and I almost didn't.  However, I decided to look at the caller ID.  The call was from Maple Manor Nursing Home.  My heart sank as I picked up the phone.  Bad...
     The person on the phone was the nurse taking care of my mother.  He was calling to let me know that mom's condition has suddenly deteriorated.  Her extremities were mottled and she was now unable to get out of bed and not able to eat or drink.  We decided to place mom in palliative care.  So now I was forced to face the passing of my mother.    Worse...
     I drove down to Rochester around noon after canceling appointments and arranging motel reservations.  Since getting here I have been sitting at mom's bedside talking, holding her hand and remembering all the wonderful times we had.    My sister Joy is with us, my brother Ken was here and mom had visitors from family friends.  Memories are flowing, no tears yet...  Worse.....
      As far as I am concerned, there is nothing worse than watching someone you love drift slowly towards the end.  Mom has had dementia that has slowly robbed her of life.  As we watch the light in her eyes dim and go out, the pain is immense.  We know that she will no longer be in pain and she will be with dad but still letting go is so hard.  I wish that for one short time, even just a few minutes, I could have a conversation with mom.  A conversation like we used to have.  Talking about our lives, sharing memories and laughing.  Just a few minutes.....   Worse.......
  So, we watch, we wait and we hope all will be well in the end.   Better?

Top Floor, Sunshine and Clear View - Going DOWN

     I have been doing a lot of thinking about my life, my world and especially my mood lately.  I have tried to explain how I am feeling but have had trouble putting it into words.  Then, during one of my MANY sleepless nights, it came to me, my life is very much like an elevator in a skyscraper, constantly moving up and down, never staying on the same floor and being influenced by people, circumstances and actions that push the buttons causing the elevator to move. 
     Picture this: you are a skyscraper in a large city.  You may be surrounded by other skyscrapers or you may stand alone. Inside your skyscraper is an elevator that is your mood.  The higher the elevator goes, the better your mood.  The lower it goes, the worse your mood.  Your elevator goes up and down as people, circumstances in the city around you, and the resulting actions push the buttons that may take your elevator to the top (scenic observation floor) or the bottom (subbasement levels) or to any floor in between.
      My skyscraper has just a few other skyscrapers around it, offering love and support.  Lately the elevator in my skyscraper is at the lower levels and having issues moving up.  In fact, my elevator has gone lower that I ever thought was possible.  The stress of my health, my AIDS diagnosis, the current state of the "city" my skyscraper is in (the USA) and some of the truly frightening people in my city as well as the awful election that has taken over my city (and has gone on FOREVER) all are pushing the elevator buttons to go down.  So far my elevator has reached the lowest point yet, the sub, sub, sub, etc., basement.  The place of darkness where monsters live. Where the darkness is overwhelming and the oxygen is sucked out to fill the top floors.  In other words, I have been severely depressed.  In fact, I reached a level in my skyscraper that was so low, I had not thought it existed.  I dealt with constant pain, I was horribly sad, I questioned if my life was worth continuing the fight, I questioned my own worth and I actually thought about what would be the easiest and most painless way to end everything and take down my skyscraper.  I also wondered if anyone in my city would care if my skyscraper was gone.
     Through talking with my psychologist, and working with my psychiatrist to better deal with the low elevator by changing and increasing medications my elevator went up.  Through hearing from Jim, my wonderful and supportive husband, and a very few family members who care, my elevator has continued to go slowly up.  It will be a long and slow process to once again approach the observation floor but I have nothing but time.  The pain will linger but I am healed from my last surgery, so that helps.  I am continuing to see the acupuncturist and we are working on specific places in my skyscraper that are in pain, slowly working to "fix" the structure of the building and therefore slowly decrease the pain.  I am trying to get myself to once again interact with the skyscrapers around me.
     So, I am no longer in the basement, my elevator is on the first floor of my skyscraper and the doors are open to take on new passengers and perhaps go up.  My skyscraper is still standing and I hope it will continue to.  I am beginning to once again appreciate my life, also those skyscrapers who stand around me not to mention all those who might move into my "neighborhood" and "family".  Stay tuned and maybe the next post will be about the view from closer to the top! 

Fear and fear itself

     Since the shooting in Orlando this past weekend I have been thinking a lot about fear in my life and fear that others like me might have.  It is with a heavy heart that I feel the need to explain myself, to explain a life of fear and the hope that kept me living.
     As a boy I remember always feeling afraid most of the time.  I was afraid of being different.  I didn't like sports, I liked music.  I didn't play football, I played the violin and piano.  I didn't play baseball, I played kickball.  I didn't want to have a girlfriend, I wanted a boyfriend.  I was not like the other boys and they knew it.  I was bullied, I was threatened and feared for my safety.  Even in a "nice place" like Rochester, MN in the 1960's and 1970's, I was in fear.  I could not be myself.  Sometimes the fear was enough to fake being sick so I wouldn't have to go to school.  Most of the time the fear just caused me to go into my shell and become the introvert I was and still am today.  And even though I had a very loving family and a few good friends, I feared what would happen if they found out who I really was.  I feared that they too would hate me because I was different.  In spite of this constant fear, I was hopeful that some day I could be who I was, open and honest about being gay in a world where that was not the "norm".
     When I moved to Minneapolis with Jim in 1986, some of the fear I had growing up began to fade.  Suddenly I was in a city where there were others like me.  I had the love of a really good man and with Jim, I was part of a larger picture, the gay or GLBTQ community.  Still I feared being totally who I was in public.  Even though we were in love, we were not allowed to show that love as we walked down the street or sat in city parks.  We could not hold hands or kiss where someone might see us.  I feared that we could only be who we were in the privacy of our own home.  Still, I was hopeful that things could change, that some day we could be open and publically show our love.
     Then in 2002, I was diagnosed with AIDS and my world changed dramatically.  Suddenly I had to be open about who I was to strangers, to doctors and nurses, to the Department of Health.  I had to be open and honest to my family, friends and coworkers.  Suddenly my fear took on a whole new perspective and not only was I in fear of being who I was but I had to fear that people in my own community would think less of me because of my diagnosis.  I feared losing friends and the love of family because of the shame of having AIDS.  I also had to fear for my life because of my health.  As I came to terms with my new fears, I realized that being open and honest, being who I was and telling people about my diagnosis was helpful in lessening the fear.  After a short time, thanks to a good friend and teacher at a local high school, I began telling my story to complete strangers and high school students.  I was suddenly telling people about being gay and having AIDS.  Yet, there were fears of stigma and shame and fears of being too public.  But I held out hope that some day I could be myself and not have any fear.
     In 2006, after 20 years together, Jim and I were legally married in Vancouver, BC, Canada.  As we spent the week in Vancouver, my fear was gone as suddenly we were in a place where who we loved didn't really matter.  From the moment we crossed the border, we were first class citizens.  We could be ourselves and I had no fear.  It was wonderful!  Then we came home.  As we reached security in our own country, we were back to being second class citizens.  We were forced to go through security separately, as not legally married, not as a family.  The fear returned.  But again, I held out hope that one day our country would recognize our marriage and we could be ourselves without fear.
   Then suddenly it happened.  Marriage equality happened in Minnesota!  We were finally first class in our home state.  The feeling of joy quickly replaced the fear. And then marriage equality was the rule in all of the US.  We went to GLBTQ Pride that year with a renewed sense of who we were and we actually felt no fear walking together and holding hands.  We had finally made it to the place where we were all equal, or so I thought.  But there was always an underlying bit of fear and we continued to not show affection in public places.  Still, we had moved toward the right direction and hope was closer than ever.
     When the current Presidential election began there was a huge outpouring of hate and bigotry in our country.  Suddenly all the fears I had lost returned.  I feared that the wrong people would find out who we were or find out about my AIDS diagnosis.  I no longer felt safe in my neighborhood, my city, my state and country as I was afraid that the hatred and bigotry had spread.  I began to fear that if a certain Presidential candidate won, Jim and I would again be reduced to second class citizens and the hate and bigotry would spread enough that we would be forced once again to hide who we were.  I feared that I might not be safe outside my home.  Yet, I continue to hold out hope that the best candidate will win the election this coming November and my fears can be put to rest, at least until the next election.
     But this past Sunday morning my fears came rushing back.  As I watched the horror on the news and saw my GLBTQ community attacked and hurting, a lifetime of fear flooded over me.  I feared for those who were at the nightclub and their families and friends, I feared for our friends who live in Florida and I feared for our community and for our country.  Was this the beginning of more violence against the GLBTQ community, against our country?  Who would be next and when?  Would we be safe or would we have to fear leaving our home and would we have to fear attending Pride this year?  My hope once again began to fade. 
     And it was then I realized, fear was what the haters, the bigots, the shooters, the "terrorists" want me to feel.  Fear is what they expect.  The more I thought, the more I realized that I would not go back to being afraid, I would stand with the man I loved and show courage when courage was most needed.  We would attend our GLBTQ Pride with courage and strength and we would not let fear rule.  We would show who we were and who we loved without fear.  And maybe, just maybe, we would even hold hands or kiss in public. 
     Hope MUST replace fear.  Hope MUST win if the world is to become the world I dreamed of as a child.  Hope of a world where we can all be ourselves, love who we want and show that love without fear, without being forced to be afraid.  Hope of a world where little boys and little girls can be different and that is okay.  I still have hope.....  

Well, life changes... Sometimes for the Good!

     I know it has been a while since my last post and I am sure some concerned readers are wondering what happened to me.  Well, things have changed (finally) and mostly for the good.
     Let's start where things left off.  As you might remember, I was a mess.  I was wondering if I had made the right decision to live when I was first diagnosed with AIDS after everything seemed to be going wrong with the deaths of family members and the seemingly impossible fights to get quality health care not to mention the decline of my quality of life that all in all made the start of 2016 one of the worst ever.  Well, things change...
     It all began with my wonderful husband, Jim, taking over and calling HealthPartners to complain about the pain doctor I was seeing.  Suddenly, I had an appointment with a new pain doctor plus a wonderful psychologist who specializes in pain management, a terrific psychiatrist who also specializes in pain management, a TMD doctor and physical therapist who will work on my clenching issues, appointments for acupuncture and finally, an appointment with someone at HealthPartners who is certifying patients for medical cannabis.  And all of these people working together to help the whole me!
     My new pain doctor is a young man with lots of sympathy and lots of ideas about how to deal with my whole body instead of just a certain part.  He suggested the others in my medical team to work together to improve my quality of life as a whole.  What a concept!  Now I will be seeing many who will all work towards the same goal. 
     With my therapist, we are working on my life as it is, with all my pains and exhaustion.  We are trying a rapid eye movement type of therapy that will work on ridding myself of the bad feelings of past trauma and letting go of those feelings.  She sees me and Jim together some of the time and me alone at other times.  She is also the one who kick started me on seeing one of two medical professionals in HealthPartners for the medical cannabis.  I am seeing her once a week and have really been enjoying these appointments!
     The psychiatrist is working on the medical aspect of my depression and has started me on a low dose of an antidepressant to take the edge off and to increase my energy level.  So far it seems to be working a bit.  I have seen her twice and she really takes the time to understand exactly how the medications are working for me.  I can't say they cure everything but I feel a bit better and with the rest of the work the team is doing, I should be getting back to my happier self soon!
     The TMD doctor set me up with the Physical Therapist to work on my stress clenching and he will also fit me with a brace to wear to help me stop the clenching.  He is a great doctor who spent time with me listening and examining my jaw and teeth to determine the best way to proceed with treatment.  Hopefully this will prevent any bad and expensive dental work.
     The physical therapist is working on exercises to help me to stop my clenching and to relax my jaw.  One not so good effect from the first session, I came home to one of the worst headaches I have ever had.  On a scale of 1 to 10, this one was a 12!  The only thing that saved me was the Imitrex that I had on hand for my cluster migraine headaches.  Yikes!
     Acupuncture has been nice too.  I am back at the Penny George Institute and working with a couple of terrific acupuncturists.  My first session was nice at the time but again, caused me pain after I was home.  In fact, the pain started around 5:00am and woke me up.  Once again, Yikes!  Thank goodness for the Vicodin I keep on hand.  The second session was not so much a problem compared to that!
  And finally, I AM NOW CERTIFIED IN MINNESOTA FOR MEDICAL CANNABIS AND APPROVED BY THE DEPARTMENT OF HEALTH!  In fact, I purchased my first 2 doses yesterday.  I am excited to try it.  The one BIG downside however is the cost.  So, I will be reworking my budget and will figure out some way of paying for the cannabis!  Perhaps I could sell myself?  Okay, that wouldn't work since I would be the one to pay... 
     Anyway, things are finally headed in the right direction in my life.  I have a great medical team working on the whole me and not just bits and pieces.  And, as always, there is my terrific husband, my hero who is willing to kick some butt to get things moving!  I am starting to see just how terribly lucky I really am to have chosen to fight AIDS to live!

     Oh, and one more thing, in case you didn't see it, I was interviewed by Sam Radwany at WCCO on line for a great article.  Check it out -

For HIV/AIDS Patients In Minnesota, The Fight Is Far From Over: HIV/AIDS patients and activists say their cause has fallen to the wayside as public interest wanes.



    

Is depression a four letter word?

     Well, a lot of nothing has happened since my last blog post.  Seems I get two steps forward only to be pushed three steps back.  My health care team is not helping my mental health and I am becoming more and more depressed and angry.  Plus my life in general just seems to be a mess.  I can think of a few other words to describe my life lately but all are "R" rated and most are four letters.  Sh*t, for example.  H*ll would work too.  F*cking pile of stinking, runny, smelly sh*t describes it best for me but is certainly more than four letters.
     The wonderful (?) HealthPartners seems to be doing whatever it can to make things difficult at best.  Appointments have been canceled and I have to fight to change pain doctors.  I still can't get certified for medical cannabis by my medical team because the HMO will not allow their doctors to certify any qualified patients.  Seems the large pharmaceutical companies have bought them out.  (A discussion for yet another blog post.)
     I did have an appointment with a psychologist scheduled for last Monday but last Friday afternoon, they called to cancel and reschedule.  Now it will be the end of May before I can see someone.  Guess my messed up life is not too important that it can't wait a month...
     I have seen a pain medicine doctor a few times but I did not like his get them in and out attitude.  He diagnosed me with fibromyalgia and prescribed some medications.  Then when I questioned one medication that he prescribed because of heart issues I was having he asked, "Who prescribed that?"  Yikes.  Plus, I saw a new family practice doctor who suggested that perhaps fibromyalgia was not the cause of my pain issues (he actually did a quick test to double check) and that perhaps I get a second opinion.  When I tried to change pain medicine doctors, I was told that both the old pain doctor and the new pain doctor had to approve the change because of possible opium pain medication abuse.  Huh?  So I waited to hear back.  Today I called them back and was told that the new doctor agreed with the fibromyalgia diagnosis without ever seeing me and that I could not change.  My reaction, just who the hell paid the premiums and why does the patient not have the right to choose the best doctors for their needs?  I am now waiting for more answers.  I know that I will never trust the old pain doctor so I just might end up with no pain doctor.  Vicodin still remains my friend.
     In 2002, when I was in the hospital and close to death, I spent a lot of time and energy deciding whether to fight and survive or give up and go peacefully to the next stage of life, the one called death.  I decided to spend my energy fighting and I literally came back from the point of death.  Lately I have been wondering if my decision was the right one.  I have actually been thinking about what if I had let go.  What if I have given up and passed into the great beyond? 
     As far as I know, this is a definite sign of serious depression.  I realize this is a problem, Jim realizes this is a problem, hell, everyone with half a brain cell would probably realize this is a problem and yet I can't get HealthPartners to realize this is a problem.  And I just can't change clinics because of a 20 year history with them and I would have to change health plans.  Then start all over with a new team and establish a relationship with a new doctor, etc. 
     I am trying hard to keep my head down, trying not to let life push me too far and I am trying hard to find my positive outlook and sunny disposition.  Spring has sprung, it is time for my outlook to grow and bloom again, make that stinking pile smell sweet again.  Or else...........       

Does anyone know how to plug holes or polish silver?

      2016 has started off as a bad year for me and for the people I care about.  So far, everything that has happened this year seems to have turned to crap.  Jim has said I have depression for a while but until lately I have denied it, I have dismissed it.  Why, well because I have always been the optimist, the glass half full kind of guy, the guy who can always see the silver lining, even in the darkest of times.  But these days, my glass has some really bad leaks and the silver lining is becoming very badly tarnished.
     2016 started with my brother Gary's cancer getting worse and finally taking his life.  I hate the fact that Gary is gone and that he is the second brother of mine to die.  Gary had a wonderful family with grandchildren (and one on the way) that he should have been allowed to watch grow up.  He should have been able to grow old with his wife and have the chance to become the proud grandfather watching with a tear in his eye as his first grandchild walks down the isle.  But instead, he is physically gone, cancer has taken him and only his spirit can watch us from where ever he is.  And even though I got the chance to say good bye to him, I hurt knowing I did not get the chance to tell him so many things.  I never could tell him that I was very angry that cancer would take him away from those of us who cared.  Gary's death started the leak in my glass and started me noticing tarnish on my silver lining.
     The next month my dear sister-in-law, Jim's only sibling, Barb, died from cancer.  Barb and Jim had the kind of sibling relationship that would make most of us jealous.  When they would talk on the phone or get together, they could literally talk for hours.  And Barb had a laugh that would make everyone around her smile.  We had recently traveled with Barb and her husband Tom and we enjoyed every minute together.  Barb even sent me a message when Gary died, when she was battling her own cancer, offering her sympathy, her support and giving me strength.  I feel that Barb was also taken away much too soon.  We had so many more trips to take, so many more places to see.  We needed to laugh together again.  I know that she will be with us as Jim and I travel to new places, that she will laugh with us again and will keep giving us her strength.  But still, the leaks in my glass grow bigger and the shine turns to a dull grey on my silver lining.
     Then there is the ongoing fight with my health.  My pain is now almost constant.  And my fear grows.  Am I going to be the next one to die?  My medical team has been less than helpful.  The HMO I am forced to go to refuses to allow me to be certified for medical cannabis.  And lately, contacting them about any issue is nearly impossible.  Then this past week, while renewing some of my prescriptions, I was told that before one of them could be refilled I had to see the pain doctor.  The soonest that doctor had an appointment opening was two months away.  When I had to fight just to get my medications, I finally lost it.  Do they really think I will abuse my medications?  Does my medical team know me at all?  And because of my insurance, I can't change clinics.  I am stuck going to a clinic that doesn't care about me and doctors who don't seem to care either.  There are times these days when I feel as if Jim, our cat Rudi, my sister Joy and a very small handful of friends are the only ones who do care.  Sometimes that leaves me thinking, did I do the right thing when I fought to live?  If I was gone tomorrow, how many people would be sad?  My glass is really becoming empty, the leaks are growing and the silver has now lost all of it's shine.
     I know that I do make a difference in the lives of some of the students that Annie and I talk to.  I also know that Jim really loves me and Rudi can be so very caring.  I know that I have a few family members and some really good friends who would miss me, who really do care.  The glass still has water in it and the lining can be polished.  But then there are times lately when I feel like the world is against me, like I am forced to fight in a war that I never expected.  And I am getting tired of fighting.  I am getting tired of trying to keep my glass half full, of pouring water in faster than it leaks out.  And now I have given up on polishing my silver lining, I am letting it go dull.   
  So, what is next?  Can I find help?  Do I see a therapist?  Do I add to my medications as a tool to fight my depression?  Do I continue to fight for my health and my health care and make the clinic and doctors care?  Or do I patch the holes in my glass by myself and get out my own silver polish.  Is this really depression?  And is this depression the result of the HIV, the HIV medications, living this fight, this war or is it something else all together?  And will 2016 ever get better or will I have to keep fighting in a war I didn't plan on?  Can my glass again be half full instead of quickly becoming empty?  Can I once again see the shine from my silver lining? 

     Stay tuned, I am sure there will be more to come, I am sure I will plug the holes and find the polish...... 

Happy (?) New Year

     Well, it is now 2016 and according to my horoscope I am supposed to have a great year.  As far as I am concerned, it can't get much worse.  Then again....
     As I said in earlier posts, my brother was diagnosed with terminal cancer this past fall.  He made it through the holidays but now it seems that he will probably not be around much longer.  He has been moved to a nursing care facility for palliative care.  I went down today and spent the afternoon with my brother and family.  He is unconscious now and being given morphine for the pain.  I have never felt so helpless.  I never thought my strong and healthy brother would be in this condition.  Seeing him laying there was one of the most difficult things I have done.  Seeing a brother dying is an awful thing to bear!
     Jim's sister has also been diagnosed with terminal cancer.  She has lost her hair from chemotherapy and was hospitalized from a severe strep infection due to loss of white blood cells.  She is back home and will be restarting a less aggressive chemotherapy.  Jim has been there helping and taking over with the care of their mother. Jim said that she is doing okay and is gaining strength.  My hope is that she will be able to regain her strength and hang around for a long time to come.
    Then there is the fact that my pre cancerous cells are back in force.  I will be undergoing treatment to "burn" the pre cancerous cells with acid every month.  Gads, it is painful!
     It wasn't too long ago that I thought I would be the first of my generation to die.  Now I am watching my brothers die.  It is such a difficult thing to do. 
     So, happy new year?  I hope it will eventually be.... 

I Hate Cancer - Part 2

     It is the holiday season, it is supposed to be the happiest time of the year.  Right?  Yet, there is a dark cloud hanging above our house this year.  And weather, politics, money, or any of the other usual holiday depression makers are not the reason for that cloud.  And that cloud fades my holiday spirit as it wilts and fades a holiday wreath.
     As I told you in my last post, my second brother was dying from terminal cancer.  As of now, he is still living and proving that he really is tough and strong, that his tough exterior is not just a show.  But, the cancer is still there, hanging over my brother and his family this holiday like that dried up holiday wreath. 
     Plus, a week and a half ago, I had a colonoscopy and surgery to remove a polyp and a bad looking spot near my anus.  The bad looking spot was removed and is located in a place where I am reminded of it through pain and blood every time I have a bowel movement.  (I know, TMI)  And sitting for long periods isn't too pleasant either.  The bright spot, the polyp removed from my colon is not cancerous and the large spot removed from the outside is only precancerous.  So for the moment, all is good in that neck of the woods.  The ribbon on our wilting holiday wreath was still a bright shade of red. 
     But now another close family member has cancer.  My sister-in-law just told us that she has terminal cancer.  Hers is breast cancer that was somehow missed until now.  It has spread to her liver and bones and she has begun chemotherapy in an effort to slow and perhaps stop the spread.  She remains positive and her attitude is inspirational but still the cloud thickens.  Now the holiday wreath has wilted and the red ribbon once again has faded along with our holiday spirit.
     Two brothers and a sister-in-law all diagnosed with cancer within a year and a half?  Plus my ongoing battle with anal cancer since 2004.  I am finding optimism to be a difficult thing to find these days.  Yet, I know there are people who are much worse off than we are.  People who are born into extreme poverty, people who never know the feeling of love, people who face war and torture on a daily basis.  People who lose loved ones die way before happy memories can be made.  People who suffer and die from the very disease that I fight.  People dying of disease without access to any medication or healthcare that I sometimes take for granted.  People who have never known a happy holiday. 
     So I must concentrate on the positive.  There is the fact I have been loved by my brothers and sister-in-law and I have loved them in return.  I have known them, learned from them and shared wonderful times with them.  I have been spoiled by their love and attention and I have seen the concern in their eyes and heard concern in their voices.  I have so many fabulous memories of the happy times with them that I will share with anyone who will listen.  I have been so very lucky to have had them in my life.  And I remain lucky to have so many more fantastic and loving people still in my life.
     So now, in spite of the cloud, in spite of the faded and wilted wreath, I will try to keep a bit of holiday spirit alive and try to share as much of it as I can.  Because after all, this is the happiest time of the year.  Right?

 

I hate Cancer!

     Cancer.  A word everyone has heard in one way or another and many of us have had to deal with, either directly or through someone we know.  It is a word that strikes fear in all of us, a word we never want to hear from our doctor.  And yet, we all hear the word "cancer" so often that we can become dulled to the fear that stupid word can carry.  That is until we hear it in our personal lives.
     Two years after I was diagnosed with AIDS, in 2004, I was told that I needed to have surgery and biopsies to see if I had anal cancer.  Sure enough, lots of precancerous areas and cells were found and removed.  Since then I have had more than a dozen surgeries to remove the precancerous cells and abnormal anal tissue and to make sure the disease is not spreading or becoming invasive.  It has been painful and debilitating, especially since I also suffer from chronic diarrhea.  It is never pleasant but I deal with it.  The surgeries are always better than the alternative.  My next surgery happens to be next month.  Yippee!
     My really healthy husband has also had cancer, colon cancer.  A spot was found during a routine colonoscopy.  It was biopsied, found to be cancerous and removed.  It was caught early and all cancer was removed without any problem.  So far, his cancer has not returned.  We are the lucky ones.
     A little over a year ago, I was informed that one of my brothers, the fourth child out of five in our family, was in the hospital and was dying of lung cancer.  Even though it was not a huge surprise, he smoked much of his life and did not take great care of himself, it was still difficult to go through the loss of a sibling when he was still relatively young.  It was difficult to know he had to suffer and die from cancer.  It was also difficult to know that his children and grandchildren had to suffer the loss of their father and grandfather.  Cancer took him when he was too young to die.
     Now, I have learned that a second brother is in the hospital, again dying of cancer.  From what I understand, he has been given a couple of months to live.  The cancer has spread throughout his body and is considered "incurable".  This time it is more of a shock since this brother has taken care of his health and previous cancers have been found and been taken care of, various cancers he has fought since his childhood.  It is a shock to know that a man so full of life and energy has to go through this awful thing, has to suffer and die from cancer.  Again, it will be terribly difficult to know that his wife, son and his grandchildren (and the rest of us who know and love him) will be without him from this point on.  And of course it is difficult to know that he will probably be the second of my mother's children to pass away before she does.  How do you tell a mother with sever dementia that her middle child is dying, the second child in less than two years?   Again, cancer is taking him from us too soon, he is much too young.
     Cancer.  I hate that word and all the questions that go with it.  Will there ever be a cure?  As long as someone is making huge profits from the treatment of cancer (or HIV/AIDS, diabetes, insert disease here) will anyone ever be allowed to find a cure? Someday, will we learn we do not have to fear that word?  Someday, will there be a chance that cancer can be prevented?  Cancer.  Will the world ever forget there was such a thing?
     I am saddened and shocked by the latest cancer news in my family.  I am scared due to the fact I might have a higher risk of cancer because of HIV/AIDS.  And I am angry that cancer exists at all and that a cure seems a lifetime away.  And I am furious that cancer will take another person I have known all my life, a brother I have admired, respected and loved.  A man who is a brother, a son, a husband and father, a grandfather, a friend and a neighbor.  And I am pretty sure this will not be the last time I hear that word.  
     Cancer.  I really HATE that word!!!

End of an Era or, It was Fun While It Lasted

     From the middle of September to the middle of October, Jim and I went on another cruise adventure.  We always have enjoyed traveling on cruise ships mainly because of the fact that our room travels with us.  That way, if I am not feeling well or am exhausted, I can easily rest.  An added bonus, watching the sea pass by and change every day is always relaxing and interesting.  This last trip was different, in addition to the usual photos, memories, gifts and souvenirs, we brought home something that will probably change our travel from now on.
     The cruise we were on was a repositioning cruise that would bring the ship from Europe to the US for the winter season.  These types of cruises are favorites of ours because we not only see fantastic sights in Europe, we cross the Atlantic ocean.  This cruise we traveled around the British Isles, cruised to the Azores then across the ocean to Florida.  We saw so many wonderful things and we went to places I have always wanted to see.  The first half of the trip was perfect.
     Then things took a turn.  It started with a shingles outbreak.  I always can tell when I am about to get an outbreak of shingles, I have had enough to know.  The shingles told me that my body was under stress.  The stress turned out to be physical stress of trying to overcome an illness that was running through the passengers on the ship.  I very quickly realized that I was very sick.  I spent two sea days in bed, not eating and trying to sleep off my fever, coughing and congestion.  I tried hard to get back to my friends and family who were traveling with us.  As we crossed the ocean, I rested and took antibiotics to help me get well.  But I didn't.
     By the time we reached Florida I thought I was feeling better.  The warm sunshine seemed to re-energize me.  When we flew home, I thought I was over the bug that I caught weeks before.  Then, within a couple of days of being home, I once again began feeling awful.  I had a slight fever and no appetite.  And worse, what ever this bug was, it began to travel from my lungs to my sinuses.  After days of this, I went to a doctor who diagnosed a sinus infection and prescribed a strong course of antibiotics.  These antibiotics may have fought the bug but they also caused the worst diarrhea I have ever had (and I have had a lot).  And still I felt like crap (literally)...  After I was done with the antibiotics I thought I was getting better.  That was until my right ear plugged and I lost hearing.  I went to an ENT who diagnosed an ear infection and because of the pressure in my ear, he poked a hole in my ear drum and sent me home with antibiotic ear drops.  And still I didn't get well.  Again I went to a doctor who again put me on antibiotics.  This time, I started to feel better.
     I had emailed my sister from the cruise on October 8th saying that I was sick.  It is now over a month since that email.  The bug seems finally to be losing it's grip but I am weak and always tired.  I have lost over 10 pounds and all my energy plus I have lost the will to leave the house.
     This was not the first time I have gotten sick on a long cruise.  The stress of getting to the ship, being in a closed environment on an airplane, spending time with people who cough into their hands then refuse to wash them (proving that money does not buy class) and then the closed environment on the tour busses.  All these things contribute to the risk of getting sick.  And, because of my compromised immune system, I usually end up sick.  This time however, the illness was the worst and I finally realized that this type of travel was not good for my health. 
     So, now I am still at home recovering and I wonder if travel will ever be an option for me.  I will always be afraid of becoming ill and not being able to enjoy travel.  And, of course, illness is not a souvenir I want ever again.  I am depressed and sad, I am afraid and scared.  I really want to see more of the world with the man I love and yet, is it worth my health?  Will I spend the rest of my life at home, wishing I was traveling somewhere else?  Maybe time will ease my fears and maybe not.  For now, I have photos and memories and a wonderful man to share them with!

Would I, should I, if I could?

     I am often asked if I wishd I could go back in time and change my diagnosis, become HIV free.  If there was a time machine and I could go back to before I was infected with HIV and stop the infection or go back and be diagnosed before I went from HIV positive to having AIDS, would I?  I have spent much time thinking about this and yet I cannot give a definite answer.  Sometimes the answer is yes and sometimes, no.  But since I have no access to a time machine, I guess I will never need to make that decision.
     Of course, I would love to be healthy and strong.  Yes, without pain and without all the health issues that have come with my AIDS diagnosis would be wonderful.  To continue to work in a job I loved, to travel without limitations and to not worry about having to take19 pills a day would be heaven for me and I am sure that Jim would prefer this life for us as well.  To be healthy would be my best reason to go back and change my future.  There have been many times when I didn't think I really wanted to go on with this life.  There are times when death almost seems like a better option that living with the agony of AIDS.
     Then I think about my life since my AIDS diagnosis.  I have been honored to meet many wonderful and inspirational people.  They have become friends who either are living with HIV, AIDS or work with those who are living with HIV.  Every day I am inspired by the courage and strength of these people.  And I realize that I am not alone, there are many of us throughout the country who deal with life and all the symptoms that HIV and AIDS brings.  We live, we love, we work, we travel and most of all, we survive. 
     I also think often about the person I have become since my AIDS diagnosis.  Since returning from the hospital in 2002 I have learned many important things.  I have learned to listen to my body.  I have learned to take care of myself.  I have learned to fight for the things that matter the most in my life.  I even fought my terminal shyness to become a public speaker and HIV prevention educator, speaking to young people and their parents about my life and how to prevent HIV.  I learned to enjoy my life even with the hardships that AIDS brings.  And when I am really down and depressed about my life, I have a large box filled with thank you cards and letters from students who listened to what I had to say and who learned that a life with HIV/AIDS is not easy and can be horrible.  Reading the cards and letters gives me strength to carry on and to realize that my life with AIDS can be a teaching experience for others.  The people who hear me speak can learn and can spread the knowledge of life with HIV and AIDS and how they can prevent that from happening to them.
     Most of all, since my AIDS diagnosis, I have learned to be grateful for what I have and what I have accomplished.  I have a beautiful home, I have family and friends who care about me.  I have a cat who gives me purr therapy and makes me feel loved and warm.  And most of all, I have a wonderful husband who cares deeply for me and our life together.  Jim is my strength, my life and my love.  He is my caretaker, my nurse and my pill reminder.  He is my chauffer, my biggest fan and my best critic.  He is the love of my life.  And I think that even though our marriage is not absolutely perfect, we still disagree from time to time, we are stronger because of what we have been through together.  It seems that my AIDS diagnosis made us stronger and we know that together, we can handle what ever life sends our direction.
      So, if I could go back in time and change the circumstances that led to my HIV infection and the development of AIDS ravaging my body, would I?  Good question.  What do you think would be best for me?  Would my life be better without AIDS?  Would I be better off without the pain and suffering?  Would my life be better because I was not infected with HIV?  I can make guesses but I will never know.  Unless, of course, you know someone with a time machine.

     What do you think?!?

The wall that will NOT move...

One year ago I had really high (no pun intended) hopes for the new law that would help Minnesotans like me obtain Medical Cannabis. I had been accepted to the Governor's Task Force on Medical Cannabis Research and was really looking forward to July 1st, 2015 when I would be able to purchase Medical Cannabis that might help ease my pain, help me sleep and maybe slow my neuropathy. Boy, was I sold a bill of goods...

Since the beginning of June this year I have been banging my head against a solid brick wall that is made up of my medical providers, the misconceptions and misinformation that surround Medical Cannabis and the way the Minnesota law was written. I have been asking, pleading and trying everything I can think of and still, my head aches and the wall has not moved. I was quoted in an article in the Minneapolis Star Tribune (http://www.startribune.com/medical-marijuana-now-legal-in-minnesota/311315151/ ) and was interviewed by Angela Davis on the WCCO 6:00 news (http://minnesota.cbslocal.com/2015/07/02/an-architect-of-medical-marijuana-law-upset-he-cant-use-it/ ). And still I cannot get the Medical Cannabis that might help me to live a better life.

I saw my Infectious Disease doctor at HealthPartners on Tuesday, July 14th. His response to my question about obtaining certification for Medical Cannabis from him was “No”. He said, “HealthPartners’ involvement in the MN Medical Cannabis Program will be reviewed in the future. At this time, HealthPartners Infectious Disease providers will not be enrolling in the Minnesota State Medical Marijuana Program. This decision may be reviewed in a year.” He did say that I was welcome to find another medical provider who was certifying patients but the only HIV clinic that he was aware of certifying patients in the area was HCMC. I have been with HealthPartners for over 20 years and with their Infectious Disease clinic since my AIDS diagnosis in 2002. I cannot change providers due to my state health plan coverage. I do not want to transfer my medical records. Also, I have no established relationship with the HCMC HIV clinic and it could take a year to establish a relationship before they might certify me. Finding another provider outside the HealthPartners system is not an option for me. My doctor did say that there are a few doctors in other specialties in HealthPartners who are certifying patients and he would check to see if there were any with whom I had already established a relationship. So far, no answer back.

I had also contacted my pharmacy insurance provider just to see if there was a possibility of assistance with the high cost of Medical Cannabis, estimated to be $300 to $400 per month by my HealthPartners doctor. I received a letter from Navitus Health Solutions dated July 12, 2015 that clearly states that there would be no assistance provided. “This request has not been approved because this medication is a non-formulary medication and is not covered based on the Pharmacy and Therapeutics (P & T) Committee guidelines for the coverage of non-formulary medications.” They do give me the option to appeal their decision.

Also I received a letter from Minnesota Representative Susan Allen regarding an email I had sent to her about the problems obtaining certification for Medical Cannabis. Her response, while more positive than others, still leaves me without options for obtaining Medical Cannabis in the near future. These problems as stated above “…are all shortcomings that the legislature has heard about as the program has been rolled out. There is no doubt that they need to be addressed. That said, like you, I know of no easy, short term fixes. It is clear that this is going to have to be an issue that the Legislature revisits next session.” She goes on to say, “For my part, I want to assure you that I understand the problems presented by the existing program and will seriously consider any measures to enhance its effectiveness that may come before me”. Again, nothing will happen to help me with my issues this year. I have NOT received any response from the state Senator I emailed.

So, basically, after the interviews and the waiting, getting my hopes up just to lose hope again, I am still not able to be certified for Medical Cannabis. Even after working hard on the Governor’s Task Force on Medical Cannabis Therapeutic Research since July 31, 2014, I am still unable to receive Medical Cannabis which became available on July 1, 2015 to other Minnesotans in need. So far, no happy news for me, no miracles, no relief from symptoms of having AIDS and no end in sight.  And the wall is still not moving!