Week’s Update Blog / Sept. 22, 2017

Tuesday, September 19, 2017…wow, this year is going by very fast for me!  It feels like May was just last week, yet here we are entering Autumn and the leaves are beginning to change colors, mornings are crisp and cool, and you can feel the change of seasons in the air.  I love this time of year.  I love everything about the Fall season; from pumpkins to raking leaves in late Fall…it’s just a super enjoyable time of year – although I am not a huge fan of the leave raking task, I do manage to get it done when it’s time.

I got a ton of things done around my house this last weekend.  I did a really deep cleaning of the interior of the house, right down to washing comforters and pillows.  I’m getting ready for the winter and want to have everything organized and in place in preparation for the cold and snow.  I got the grass mowed for what I hope is the last time this season. It has slowed in growing quite a bit, so I doubt that it will need to be mowed again this year, but hey, I could be wrong!  I still need to trim my forcynthia bushes and do another coat of paint on the front porch railings and spindles. And I still need to get the back porch painted.  There’s just always something that needs attention around here, I guess it’s all a part of having a home and caring for it properly.  I like to keep things updated, in good shape, and looking nice, so I put in the extra effort to get it all done. Â

Friday: September 22, 2017 — While I’ve been feeling really great lately mentally and my immune system health is excellent, I am still dealing with a good amount of pain in my neck and cervical spine area that radiates down both arms and affects my hands.  Last week I had one day that I couldn’t keep a grip on things, and I dropped my favorite coffee cup and smashed it to smithereens.  It’s got something to do with the nerves and some disc issues in my neck that is causing the pain, tingling, and weakness in my arms and hands.  I recently had an x-ray and an MRI done on the neck/c-spine area and am awaiting the doctor’s advice and suggestions as to what we can do to help with it.  I may be facing a possible surgery to repair the degenerated discs…I am not sure yet exactly what is going to be done.  Something has to happen because I don’t want this to get any worse, or to lose the use of my hands.

The kidney issue is still also up in the air.  I’ve undergone some extensive testing, and do not know the results yet.  I have a cyst of some sort on my left kidney, and it’s showing signs of disease, but we are not sure how bad it is, or if it’s even bad at all.  I’m not real worried about it, I’m in no pain from it and had it not been for an abnormal blood work result I wouldn’t even know there was a problem at all.

So, while I have a couple of challenges health-wise, I do feel really good about things overall.  I haven’t felt very much up to using the computer the last 10 days or so, it hurts to be on it and typing for too long. This has caused me to get behind in my emails and in replying to people.  I just hope everyone will understand that I cannot always get right back to them when I am feeling like this.  I do occasionally use my phone to check email, which I did earlier this week – to find that one friend was quite angry with me for not replying to her email from the 15th.  I tried to tell her I wasn’t feeling up to even opening up my laptop, but she can be a bit extreme when it comes to being mad at me for little things like not replying to her fast enough for her tastes.  I’m wicked sorry about it, but not much I can do.

My girlfriend’s internet is down for repairs at this time.  She and I haven’t been able to really communicate for over a week.  That bums me out because I am very used to connecting with her every day at some point, but until they finish replacing the internet lines in her town they are all without cable and internet.  It’s supposed to be completed by next Thursday.  I’ll be happy when she can be back online and we can Skype once again.  I really miss talking to her and seeing her on Skype.  It’s also like this when she is out of town on business travel too.  But we have learned to cope with it alrigh
I am in quite a lot of pain in my right collarbone and right shoulder and arm tonight.  So I cannot continue typing for very long, and I have to keep resting every paragraph or so because it hurts so damned much!  I have taken Aleve, a prescription Celebrex pain reliever, as well as applied a 4% lidocaine gel to the areas to help relieve some of the pain.  I have upcoming appointments to have the nerves tested in my c-spine and arms, and am preparing to most likely have some disc surgery on my neck and c-spine.  I’m not sure what all that will entail at this point as the doctor has just started discussing it with me and we are going to do further testing to try to really pinpoint the problem.

I have to go respond to some personal emails tonight and beg forgiveness for my tardiness in doing so.  Tomorrow I am going to TRY to paint the kitchen cabinets that I installed this last Spring as well as get to the rest of the outside painting that needs to be finished up.  This will obviously all depend on how high my pain level is and if I am physically up to doing it in the morning!  Let’s hope so!

I am watching the world news very closely lately.  As I am sure most of you are too.  I am not going into my thoughts on what is going on here, it’s just too frustrating for me to deal with right now.  I fear we have entered the twilight zone in some ways.  It all seems so surreal sometimes.

Hope you all are doing well.  So, tell me, what is your #1 concern about world affairs right now?  What are you doing to deal with it?

Peace.  ~~MB

Depression, Meds, and Life Stuff…

It’s the end of July 2017…it’s a cool, rainy day here in southern Maine.  I am wearing a long sleeved T-shirt and jeans because it’s too cold for anything less!  I’ve got the windows shut (most of them) and the doors closed today.  Brrr.  This weather is just strange for this time of year.  Normally it’s 90 and humid as fuck.

Well….that got me far…I started this days and days ago.  Just never got back around to finishing it up.

I’ve been in a serious funk for about a week.  I’m in the midst of switching up my anti-depressant meds, for those of you who can relate, it’s not a fun time.  Your brain gets to depend on those chemicals to stay in balance.  So when you remove them things get a bit haywire.  I’m just lethargic and without any kind of will to do anything.  Living is a chore.  But, I’m not one to quit, so I’m hanging in and waiting on the new medication to be approved.  Fucking insurance companies.  They hold our lives hostile at times.  Evidently this new medication I am going to be taking, Trintellex, has to be pre-approved by my insurance company.  It will be a week tomorrow that I have been waiting.  And 3 weeks with no anti-depressants in my system.  Depression takes different forms for each of us.  With me it’s the lack of desire; the lack of enjoyment of life that really manifests.

I have a ton of shit to get done around here.  I’m behind on my gardening and the lawns really should be mowed tonight.  It’s 5:30pm now, so I am thinking that I will get ready and mow the lawns around 6:45 when the sun is setting and it’s at it’s coolest – and yet still enough daylight to see.  Normally I do enjoy mowing and grooming the yard.  It always makes me feel good to have it looking neat and tidy.  It also gives a temporary sense of accomplishment and well-being.

The veggie garden is going gang-busters.  It’s producing lots of nice cucumbers and zuchinni squash.  Tomatoes are green still, but will ripen soon (I am personally NOT a fan of tomatoes, but I grow them for others).  My herbs are really growing well.  I am not sure how to dry them, but I am going to research it and dry what I can for future use.  I have basil, rosemary, mint and others.  Damn, see I can’t even remember simple words at the moment, I had the list of herbs in my head and I cannot bring the names of them to the forefront of my brain to type here….another side effect of depression and lack of medication.

I have been researching some herbal anti-anxiety remedies, since I am banned from any benzos now.  I can no longer get the lorazapam or xanax.  So, I found two that are of interest to me.  Here are two pics of the bottles that I took while I was in Walgreens waiting for my weekly script.

I think I’ll get both of these products this week when I stop in there again this Wednesday and try them out.  Herbal is better than nothing I suppose.  And the valerian root extract that I tried made me kind of sick.  I didn’t get the relaxing results, but I sure did get a stomach ache and headache.  If you know of any really good ideas for anxiety reduction – besides meditation and reducing stress – those things are a given, and it’s not that I want to be under stress any more than anyone else does, but in order to live this weird thing that we call life you must be under pretty much constant stress.  You have to survive, and that in itself is stressful.

Ok, I’m off to mow those lawns….rawrrrrr!  Peace!  ~MB

Defying the Odds

Once again I defy the odds.  I was recently tested again for my HIV counts.  And once again I remain in the “undetectable” range…meaning that no HIV antibodies can be found in my body at this time.  I’ve managed to remain undetectable for a few years now, I’m defy the odds at every step.  Also, my T-cell count, the cells that form my immune system, is very strong at 662.  The average woman bodied person has about 500 so I am again an anomaly.  All of this means that my body is living with the virus in harmony for the time being.  I’m healthy and my system is strong.

I go on Friday for a liver biopsy to get a feel for the condition of my liver and such before I start the treatment for HepC which I am co-infected with evidently.  I’ve never had any problems with this, but the new treatment could mean that it can be cured and I wouldn’t have to even worry about that anymore.  The new treatment is relatively easy compared to the old treatment of shots and alot of side effects. This new treatment is pills and has a lot less side effects to worry about.  It’s about a 6 month long treatment, so I’ll be done by fall and hopefully it will work as it should, and I will be around a longer time here!  I’ve been told repeatedly that the HepC will kill me long before my HIV ever would at this point, so I need to pursue this treatment now.  I’ve avoided the alpha interferon treatment previously because it was not very successful and made you really sick with low odds for success.

Last Saturday I did the repair on my truck.  Fixed the heater / air conditioning blower motor.  The resistor was spent, so I had to work under the glove box of the interior to find and replace that.  Thank God for Youtube videos!  I looked it up on Youtube, found a good amount of repair videos on this and watched a few, thus I was able to order the right parts and do this myself (with the help of my buddy Otis) saving myself close to $200 which is what the garage wanted to do this 20 minute repair job.  Literally it took us 20 min to do it !  So now I have all 5 speeds of blower and all is well.

Saturday afternoon I went to my brother’s for a final winter snowmobiling party.  Several friends brought their machines too, so we had 8 snowmobiles and plenty of late season snow to run them on.  It was a lot of fun.  Mostly I stood next to the bonfire and enjoyed good food and some Captain and Cokes, alot of laughter and watching of the kids racing around in the huge field in their glory on those snow machines.  I did take a spin or two myself.  And I tried to get Nola to settle in on the machine with me for a ride.  She made it about 100 yards before freaking out and wanting OFF that machine.  It was rather comical I am sure.  I will include some photos here.

Disappear

Sometimes I just wish I could disappear. I feel like I can’t do anything right.  My temper isn’t geared to taking being beaten down again and again with the same words.  I will retaliate; lash out with my own vindictive words.  I will aim to hurt if I am being hurt, believe me.  And I come from a place where I call it like I see it.  If someone wants to act like a bitch to me then I will call them a bitch.  Words and actions take on a lot of weight with me, say what you mean.  And if you mean that you don’t wish to talk to me then just say it, don’t make it look like I am the bad guy somehow.

I live a very solitary life.  Hell, I am even somewhat of a hermit.  I stay to myself.  I don’t socialize very much, out of shyness and fear mostly.  When I do it’s very short and purpose driven; I go to family parties out of obligation mostly.  I don’t know how I really got to this point, as I used to be super social and go out all the time.  (I also used to drink a LOT). I really have to work on this over the warmer months.  I need to be getting out more and engaging other people.

I’ve gotten several messages asking if I am stopping blogging.  People have become used to my regular blog posts and when I don’t post for a few days they get concerned.  I’ve been bummed out lately, and not wanting to write and also not wishing to talk about what’s been going on in my little life.  I feel so small; so little in this world. Like I don’t really matter much to anyone and that hurts sometimes, it hurts really badly.  And there is no one to dry my tears.

I know many people go this life alone.  I’ve been going it alone for several years now, since I left my ex-wife. And it’s not that I want to be on my own in the world forever.  What I want is someone who sees a future with me; that wants to be part of my every day at some point in time. I want someone to hold me at night, to be there when I wake up days and to come home to dinner with. I want to cook, and laugh and watch movies about stupid things.  I want a partner in life.  Or at least someone who can see that future with me in it.  I know things don’t happen instantly, but with some work and some foresight big things and changes can make all the difference.

I don’t know that I know how to find that person who will love me again. Like someone who will care what I am thinking, and really care about how I feel as well as allowing me to care for them at the same time.  Someone I can make a solid connection with and rely on.  I can’t tolerate someone who doesn’t believe me when I tell them the truth, or who inserts her own fears into my words and negates my feelings totally. I am a very honest and loyal person, and I’m worth the effort.

On another note.  I am having to deal with some big health issues right now. The stress from those is really bad.  I try not to think about them, but it’s hard when it’s your life you are dicking with.  I’m about to undergo another liver biopsy and begin treatment for the hep C virus.  The new treatment has been quite successful, but it’s not a cake walk by any means.  It will be far easier on me than the old treatment of alpha-interferon injections, which I have refused for years.  I have decided that eliminating the risks of the hep C from my body would be the best move right now. That will give my immune system one less thing to worry about, and me one less worry as well.

The biopsy procedure is not pleasant, they basically half-assed knock me out, keeping me awake enough so that I will cooperated with them as necessary.  Then they poke two holes in my upper abdomen and do the biopsy, the feeling is like being kicked in the gut really hard.  The bruising lasts 3-4 days and I am generally back to normal.  The part that is scary is the going in alone every time.  And they always have a hard time hitting a vein in my arms, which is never pleasant to experience someone poking around looking for an elusive vein to get the sleeping juice into. This should happen in the next two weeks or so, and then the treatment is 6 months in length.   Oy vey.

That’s it for today.  ~MB

Walking into Fall

Fall is here.  The leaves are almost at peak viewing colors here in southern Maine, “they” say that peak is this coming weekend here.  The wind is howling today, so I am imagining many of them are hitting the ground, The pine trees like to shed these rusty gold needles also around now, so my yard is slowing disappearing under a blanket of leaves and needles.  The air is really nice and crisp, I like breathing the morning air when I let Nola out first thing mornings at this time of year; it’s nice to stand on the porch and take in a deep breath,  Nola loves the cooler weather, and sitting on the lawn with the October sunshine warming up her fur.

This time of year I get a little introspective about life in general.  It’s nothing and no one in particular that causes it, I think it’s just the time of year; things are dying off, changing and the days are getting shorter.  It’s a time when I tend to look back over the year and contemplate what went on, why and how, and what’s next on the journey.

Fall is also my most favorite time of year here in New England.  I love the temperatures during the day, the cooler nights are great for sleeping and you can dress in layers of nice warm clothing.  I love the fall festivals and country fairs, apple picking, pumpkins and cornstalk displays.  And I like to go for drives, just because I like to drive, up into the mountains to see the foliage.  So, I go to Cathedral Ledge every year or two to see the view of the whole valley from there.  It’s amazing. I started the Cathedral Ledge trips the year that I tested positive for hiv, (’92) the year I thought an expiration date had been stamped on my forehead and I was going to die soon…obviously that didn’t happen, as I am still here and healthier than ever.  It’s miraculous actually.

I remember that year really well.  I lived in Kittery Maine, right on the water in a great duplex apartment of which I lived downstairs at first, then moved to the upstairs which had these big wrap around decks overlooking the whole waterfront of the river. It was really cool, probably the coolest apartment I ever had back when I was still doing the apartment living thing.  It was also my last apartment now that I think about it.  I found out my sero-status that summer after my therapist urged me to be tested and I scoffed at her for even suggesting it.  Yeah, I wasn’t laughing on August 31st when I got the test results back.  It seriously felt like I had a big date on my ass that meant I wasn’t going to be around much longer.  I was only 32, hell I was too young to die.

I moved to that upstairs apartment shortly after my life-altering discovery of my being hiv+.  Yeah, I did the unspeakable…I broke up with my then girlfriend and moved.  She moved out of the downstairs apartment soon after, which I remember really irritated me because if I had known she was going to move I wouldn’t have moved myself!  I remember people telling me that I was a fool to leave her because of my hiv…but I didn’t want to stay with someone just because of that either and we had issues with alcohol in our relationship at the time so things weren’t good.  I had also met the woman that I would spend the better part of the next 14 years with as well by that time.  So I wanted out in more than one way.

I took Mom up to Cathedral Ledge that year.  My Mom is afraid of heights, so I took her to the cliffs of the White Mountains, where she was scared to death, but loved the views.  Lots of people jump from the ledges, it’s been a popular suicide spot from what I am told.  I never thought about jumping, but I did think they would be cool to climb up and repel down from.  Belaying down those faces would be exhilarating to say the very least.  I did see climbers that day that we took Mom.

My younger brother, his then girlfriend and my now ex-girlfriend, all went that day.  We took Mom’s Cadillac and Steve’s girl’s red sports car.  At one point we got stuck in a long line of traffic in Conway (we weren’t the only leaf-peepers that day) and I remember us playing the music really loud between the two vehicles and having Chinese fire-drills. That’s what we called them anyway, it’s probably not a very PC named game, but it’s where everyone exits the car, dances around it and jumps back in in a different place than where they were sitting before.  Fun and crazy game, and we were all in such a great mood that day.  I drove the Caddy all day that day, and Mom rode in the backseat, we had a total blast, but I remember that day looking long and hard at those mountains and the views and thinking it might be the last time I would see them.

I’m grateful to still be alive, and as healthy as I am today.  It’s been 22 years since that August day of discovery.  I’ve been through a rash of medications and drug trials over the years.  I’ve battled some weird illnesses because of my compromised immune system, but as of yet none of them have killed my ass.  I’ve also had the great fortune of meeting and knowing some of the most wonderful people.  I have people who are in my life today only because we met due to my illness for one reason or another and became friends.

People always ask me about dating with my sero-status being positive.  It’s never easy to explain to anyone that I wish to see, there’s always the chance of meeting someone who doesn’t have the common sense or trust in me to know that I would never put anyone else at risk.  It’s had it’s challenges. When I met my ex-wife it was because someone was introducing us when they visited to check on my health.  So she knew even before we met that I was hiv+ and she herself was an activist and well schooled in the disease.  I never thought she would give me a second look when I did start calling and asking her out, but I had to give it a try.  I remember how crazy I was for her back then and that I was really a lot more self-conscious about it.  The day she told me she didn’t care, that it didn’t make a difference to her she still wanted to be with me I was floored.  While we didn’t stay together forever, she and I remain friendly still today and although we rarely talk anymore I do still consider her a friend.

It’s actually gotten more difficult to deal with disclosure as I have gotten older.  I don’t look sick, act sick and you would never know I have this virus – unless I tell you right out.  Which I do when I am even remotely interested in anyone.  If I don’t think they already know from reading me or watching my videos where I do openly talk about it, then I make sure to tell them the deal.  It’s still never easy if people have preconceived notions like that I shouldn’t be dating or sexually active because of my status.  I know there is risk, but I would never put anyone at risk.  If I were to ever infect anyone it would have to be through mutual shared drug use – which is NOT going to happen.  I gave that up a long time ago, a super long time ago.

So, the Fall always makes me remember that year.  It was a big year of changes to my life.  I quit drinking, left a 2 year relationship, started dating the woman who I would eventually marry, and made a whole lot of changes that year.  Not everything I changed actually stayed with me, except I still don’t drink much anymore and I am a much more pleasant person just for that!  Never did pick that back up in any serious manner thankfully, and I did leave the wife eventually 13+ years later and started over one more time….but it’s all good.  Still I have some fun and fond memories, mixed in with some really scary ones truthfully.  Luckily the body and mind are constructed so that you cannot “recall” pain, because if you could you would go literally insane as the human brain is programmed NOT to be able to recall pain.  You can remember it, but not recall it. You remember it hurt like hell, but not the actual agony that you experienced the first time around.

So, anyway, that’s what today’s weather and thought process brought up for me.  Again, I know I am one lucky son of a bitch to be alive today, and especially to be as healthy as I am.  My body is a machine!  My immune system may be compromised, but you would never know it.  I take a slew of modern chemical concoctions daily and everything checks out good.  Hell, they can’t even see the virus in my blood at this point anymore….but I have to keep taking the medications or things will get bad.  I’ve got it down to such a routine now that it’s just a normal part of my day to stop for meds, no big deal.

It’s a good day to be alive….peace.  ~MB

Hello Blog!

Hello blog! I know you must feel very neglected!  I haven’t written in you for weeks!  What’s been going on you ask?  Where have I been?  Why have I not written in so long?

Well, I haven’t really “been” anywhere, just here at home and around the community.  Haven’t done any travelling outside of New England, because I am just a contented home body at this time, and I just can’t travel right now.

I’ve decided to try to return to work at the bowling alley.  I am just not made to not work at all, and even though it bothers my back and legs very bad some nights, I am going to power through it. I really need the little bit of weekly income, and the socialization of getting out there around more people on a regular basis.  I tend to hibernate far too much when left to my own devices, and that’s just not good for anyone.  People need people, we need interaction and conversation. We need others to stimulate our minds, intellect and our physical beings. I sometimes get lonely and starved for other human contact when I spend too much time by myself.  So for the next few weeks I will be readjusting to having a set work schedule and getting used to working once again! Yay!

I have been doing some minor vlogs on Youtube and I just helped some friends by getting involved in a fundraiser to help them make it through a rough spot without losing their insurance or housing. I never get involved in those kinds of things,at least not online.  But this was a special circumstance and I felt compelled to help if I could do so.  I live on a very very tight budget myself, and often it’s difficult for ME to make ends meet, so giving money is hard for me to do directly, so I thought “what if I can help them raise the money, what if that were my contribution to the cause?” and that’s basically what I set out with the intention of doing.  Never in my wildest dreams did I think we would raise the whole amount needed within a 24 hour period!!!  

What I thought would happen is that we would raise a few dollars to help, and when I got paid I would donate a twenty spot if I had it left after necessary bills. But miracles do happen, because the outpouring of support was phenomenal!  I am so humbled by the generosity of my friends on Facebook, Youtube and Twitter and also that of my personal local friends as well.  

I don’t generally get involved in fundraisers for things like surgeries wanted or for specific items.  But this was so different.  These friends were going to lose their apartment, have the lights shut off, and lose their health insurance – and they are both dependent upon that insurance to survive!  When those kinds of things are at stake then my heart bleeds for the people in that situation and I want to mend the world, ya know!  While I know I can’t help much myself, I always find something to say, do or help happen that DOES help in some way.  THAT will bring me good Karma I hope!  As it will to all those who helped make this happen for my friends this weekend, know that they are now breathing easier, and are working hard on long-term solutions, hopefully the job will come back that was lost, and things will loosen up a bit for them. Everyone who participated in making this happen should be smiling and happy themselves as well.

Nola and I have been combating the heat here in southern Maine this week.  I have one small 5K air conditioning unit (window unit) that I installed in my bedroom.  It helps to keep the sleeping area cool at least.  I do have a small television in there, so when it’s really unbearable we go into the bedroom and relax. My desk and computer are also in the bedroom (all so that I can take advantage of the A/C being in here!) so I can do videos and keep up with my online sites. I do enjoy my computer time, chatting with far away friends, or with my Mom on FB even.  Technology rules our world today, might as well join ’em, because it’s not to be beat for sure!

I had an AC unit, a larger one for the living room last year, but I unfortunately lost my grip on it and dropped it out the window while trying to take it out last fall.  It fell about 10 feet to the ground, onto a small paved area under the window, and smashed into a gazillion bits. So I think that 2013 will be the year of just using the overhead fans (thank goodness I have them in every room!) and doing all I can to just keep it a tad bit cooler inside than it is outside. There’s always a quick ride over to my sister, Patty’s, for a dip in her nice cool swimming pool, or a ride to the beach where Nola can run in and out of the waves.  Maine beach water never climbs much above 55 degrees even in the dead up heat of summer, so it’s an icey dip in the Atlantic if one dares!  Nola doesn’t seem to mind, and would rather frolick in the waves than be tossed into the pool!  But my toes turn blue and my teeth chatter just thinking about ocean water along the Maine coast.  What I enjoy most about the beaches here is walking on them, the beaches are different here, very rocky in some spots, and long stretches of light gray sand interspersed along the rocky coast line.  It’s beautiful.  And the occasional light house on the horizon makes just looking out over the Atlantic a gorgeous thing most days.  

Why have I not written in so long?  Hmm…I am not 100% sure, but some of it was just the timing.  The beginning of Spring and now Summer are busier times for me generally.  I get into gardening and yard maintenance. I get more distracted by family outings, birthday parties and cookouts.  This year I’ve had a lot of stuff going on internally I believe.  Plus I have had some health issues that have made me nervous and when I am nervous I tend to sty to myself even more than usual.  I guess, in a nutshell, I just haven’t had that compelling urge to write.  Or to let anyone in on my thoughts.  

Let me say, that my health is okay.  I do have a busted up left arm right now, torn rotator cuff and torn bicep tendon. I am going to the orthapedic surgeon on the 10th of next month to have it checked and possibly have surgery to correct it.  It hurts like hell, and yes I have to have it in a sling quite a bit unless I am resting.  

I had a bunch of testing done last week and will hear this week on how those came out.  Nothing too major. My counts are good, bloodwork is good for now.  But, hey, as you age things just seem to need more attention! LOL

Nola is doing great.  She turned 5 on June 10th -which was also my half birthday! hehehe.