Mental Health is Not Just A Hashtag ###

Yesterday was Bell’s Let’s Talk Day, where they donated 5 cents for mass communications on their platform to Mental Health Services.

Mental Health is not just a one day event. You cannot cure Mental Health with a hashtag, nor can you pay it away either. Mental Health is an everyday part of life for many people, including myself and my husband.

Many years ago, when I first met my husband, he was a happy go lucky, smart and funny young man. We had a few months of bliss, before the gauntlet fell down, and our lives were turned upside down.

He was employed at the time but that was to end abruptly. He suffered a major breakdown and ended up falling apart. We got him the help he needed, maybe because we were lucky then, or maybe the right person was in the right place, at the right time.

Hubby was diagnosed as Bi-Polar Two Rapid Cycling. Now we knew what the problem was, we had to then figure out what we were going to do about it. Treatment was in the offing.

What I did not know on the outset of that treatment was this; the man who went in, was not the man who came out the other end.

For ten months, hubby lay comatose on the sofa. I was a full time student in university, I was hitting meetings, doing all the shopping, cooking, laundry, cleaning, bathing, dressing, and feeding my husband.

He could not do anything but lay on the sofa, till the day the doctors found the right pill to give him, to get him to rise from his stupor.

And let me tell you, I screamed from the rooftops that night when he rose from the dead !!!

Mental illness is a daily struggle. And some days are better than others. I’ve learned many things about mental illness, because we live with it. We cannot just turn the tap off when we would like, or have happy days on end. That just does not happen.

Bi-Polar is an illness that takes a second set of eyes. And I believe this with all my heart:

ANYONE SUFFERING FROM ANY MENTAL ILLNESS SHOULD HAVE A SECOND SET OF EYES ON THEM, BECAUSE MANY PEOPLE SUFFER ALONE. DOCTORS GIVE THEM PILLS AND SET THEM ON THEIR WAYS. WITH NARY A WORD AFTERWARDS. SOMEONE NEEDS TO LOOK AFTER THEM.

Thankfully hubby had that second set of eyes on him, and still does to this very day. Observation is the name of the game. Because when things get dicey, you can see it from the outside looking in. And you can tweak medication or get help, if an issue arises that needs to be addressed.

Like I said, above, the man who went into treatment was not the same man who came out the other end. When he finally got up and we assessed what was left, I found that a good portion of who hubby was, was gone. And I asked the doctors where he was, and they told me,

“Well, this is what you get, deal with it.”

I was angry for a long time. Because aspects of our relationship have been missing or gone for many years. The life I had, and thought I wanted, was not the life I ended up with. And sometimes I get really resentful at that, but it is what it is and I had to accept the outcome.

When hubby got sick, I was not going to leave him, nor toss him to the curb. I stayed with him, loved him hard, took care of him and got him the help he needed, so badly.

Yes, he is not the man I met all those years ago, but he has carved his own life out of the wreckage of mental illness that took him apart. He is a two degree university graduate with a Masters Degree in Sociology. He has a career and a life that is beyond measure now.

We built a home, and a life together.

We got married in 2004, basically as a celebration of hubby rising from the dead. He got up in the month of September 2004, and we were married in November of that year, in front of family and friends.

Many people with mental illness suffer alone, many people do not get the advantage of having a second set of eyes on them to make sure they are alright. That is a gift of relationships and friendships that we can be that second set of eyes on our fellow men and women.

I see mental illness every day in our rooms. I attend meetings at the Old Brewery Mission on Sundays, and see countless homeless men and women who suffer alone because they do not have access to the kind of help we, here at home, get.

Mental illness s a scourge on the landscape.

Kids suffer too. In school, in life and with their friends, and also on social media. Bullying is another scourge on our kids. The stigma of mental illness is a problem because if you say something, kids are more likely to begin the cavalcade of stupidity and reckless abuse of their friends, so kids suffer and many of them do not make it and end up killing themselves because of the stress of suffering and the fact that they said something and kids and others turned on them and forced them into a No Win Scenario…

We must stop this kind of social abuse.

We must help our kids.

We must change the way we deal with mental illness.

And we need MORE professionals who can help those in need. We need money to pay for those services, and for the many medications people so badly need and for the most part, cannot afford because drugs are so damned expensive.

And Firstly, getting a simple appointment for mental health screenings are so hard to get. I mean people wait for days, weeks, and months just for an appointment. There aren’t enough mental health professionals out there.

And not every mental health practitioner is the right fit for everyone. Finding the right doctor is like trying to find a needle in a haystack.

We’ve dealt with major pill pushers in our day. For Real !!!

It is far too easy to push pills and abuse a patient. That happened to us and we had to find other means of treatment.

One must be picky about who treats them. Because not all doctors are created equal and not every doctor is an upstanding physician in their chosen field, and that is a FACT.

But, beggars cannot be choosers in this world, I know that. So this is my advice

BUYER BEWARE !!!

Call your friends, call your kids. Ask them if they are ok.

There is NO SHAME in saying that “NO, I AM NOT OKAY!”

That’s the first thing we must teach our kids. It is OK to say, that things are not ok.

I HEARD FROM A SPEAKER ONCE THAT:
THE ONLY THING OUR FEELINGS WANT ARE TO BE FELT.

Too many people suffer in silence because they cannot talk openly or feel safe in saying that, IT IS NOT OKAY!

We must teach our kids that it is ok to talk, AND WE NEED TO SIT DOWN AND FUCKING LISTEN TO THEM.

Put down you god damned phones and take time to check on your kids, and your friends and your family members. We ignore people to our own peril, because if we don’t check up on them and they get worse,

SUICIDE IS A FORGONE OPTION for MANY !!!

Been there, Done that, Got the T-shirt to prove it too.

Mental illness is not just a hashtag.

Pay attention. Listen and help.

We are humans who need to be cared for and loved.

Life is wasted, if we cannot do those things for others, AND for ourselves.

If you suffer and you need to talk

I AM HERE, I WILL LISTEN. I CAN TRY TO HELP.

Because I am Responsible.

A Story:

An elderly man walked into an emergency room, needing stitches removed from his hand. He was jittery and fumbling with his watch. A nurse was watching him fidget, and after a while, spoke to him and asked him what he needed. And the old man told him he needed stitches out.

They set down for the job. The old man was still fidgety, like he needed to be somewhere else at that very moment. The nurse picked up on that and asked him if he needed to be somewhere and the elderly man replied, Yes, I do.

The conversation continued, and the elderly man said that he needed to go have breakfast with his wife. That he had breakfast with his wife every day.

The nurse was surprised. And the man went on…

You see, my wife has Alzheimers and she does not know who I am.

The nurse was perplexed. And asked why, if his wife did not know who the man was, why was he still having breakfast with her every day?

The old man replied… SHE MIGHT NOT KNOW WHO I AM TODAY, BUT I REMEMBER WHO SHE IS.

That story changed my life, which was why I stayed with my husband, because he might not be the man I got in the end, but I remember who he was and I know who he is today …


Essay: Your Teeth Matter

letsmakeadeal

Many years ago, when I was in rehab, in my first year of sobriety, my counselor had some issues going on with her. Her teeth were giving her grief, and she ignored them, to her own peril. In the end, they had to pull them all, and put in implants. A job that cost a lot of money and caused her months of grief.

I seem to be walking that very same path myself.

When you are diagnosed with AIDS, like I was, whatever else was going on in your body took a backseat to your survival, from said AIDS diagnosis. The initial push to survived trumped any other problem, to our own peril, we know today.

The problem with AIDS, and now HIV is problematic. Because the medication you take is solely for the purpose of keeping you alive. And in many cases, the drugs we take are toxic to the rest of our bodies. And in many cases, other areas of care, become infected, or affected. there is no clear cut way, to properly medicate a body that is immuno – compromised.

AIDS does that to your body. You might be able to save the body, but not its constituent parts, separately. So you have to care for what you can, as long as you can, and hope major issues don’t arise. BUT, HIV is capricious. She is stealthy and devious. You never know when something is going to fail, until it fails you. Then you need extra attention or medical attention.

THAT IS, IF YOU CAN AFFORD SAID CARE …

 

We believe that our teeth will always be in our mouths, and that they will be our North Star, and never fail us … Sadly, that is far from the truth.

I should know this because Memere and Pepere, my mom’s parents, and my father’s father all had dentures by the time I came along. Grammy was the only one who died with all of her teeth in tact.

I should have heeded that warning long ago and took it into consideration, but that was not my case. Far more serious issues befell me and the concentration on survival, took precedence over any other arching issue.

Your medical heath came in the order of importance. Survival was at the top of the list. Everything else took a back seat.

Some time ago, my teeth began to fail, as I crossed the FIFTY mark in my life. One at a time. And as they gave me grief, my trusted dentist, who had been located in the HIV clinic, at the Montreal General, did the work for us, at reduced costs, because who could afford full bore dental payments?

Living on a fixed income as we had for so many years, cost us, in more ways than one. Thankfully, hubby has not seen serious teeth issues yet. But he sure is clued in now, because of where I am today.

Thinking that small problems could be “pulled out” and not repeat themselves was a false belief in my own body’s ability to prevent infection and further pain.

Many months ago, hubby insisted that I go find a reputable dentist who could fix my teeth, once in for all. We knew implants were the only real solution. After two sorties into the world of dental implants, and the costs of said work, turned out to be too expensive for our purses, combined.

We cannot afford upwards of $50,000.00 of dental implants.

Basic insurance in Quebec does not cover major dental. So we knew I would be screwed. One outfit, quoted me almost $48,000 and six months work time. The other was higher, around the $50,000.00 mark, with TWO YEARS work time.

I’ve been not doing well since.

Having to accept myself as I am. Knowing there is no viable solution to my teeth problem, at the moment. And having to accept that my friends look at me with pity, that I cannot afford to properly take care of my own welfare, makes me a little crazy, when my friends won’t look me in the eye, or look away from me, when I speak to them is disconcerting.

Over the past two months, I’ve developed serious infections. I had an abscess on the upper left side of my mouth, with a tooth that just disintegrated in my mouth. That got seriously infected and caused serious nerve damage in my mouth and on the left side of my face. My HIV doctor prescribed me Antibiotics for the infection.

That was a week’s treatment for an issue that only got worse. That hole in my mouth is still there, and the infection with it, it only moved around my mouth into the right side of my jaw and the right side of my face.

So, for the last two months, I’ve been on a steady diet of pain killers and antibiotics. I had been eating pain killers like candy, because the pain has been so insane. I’ve had issues with eating food, brushing my teeth, and sleeping at night.

This problem grew exponentially last week. By weeks end, I was a sobbing mess. I do not do excessive pain very well. I can do PAIN. But not PAIN that does not go away, and throbs in my head, like a jack hammer.

One oft day, I was getting ready to Skype with Spencer, and as the call went through and he appeared on my screen, I had a pain attack that went off the charts as I sat in front of him. Clearly, I was headed downhill very quickly. I could not pound away a pain-killer and hope it did the trick in a matter of minutes. WRONG !!!

This went on for two weeks, and culminated last week, when I could not stand the pain any more. I called all the appropriate doctors, my dentist, and made appointments, that fell during the rest of the month, and not appropriately, NOW as I needed them.

I could not get into my HIV doctor because he in on vacation, and when he goes away, nobody takes his patients. That’s just the way the Quebec Medical System works here.

You make an appointment, and hope you don’t progress further downhill in between. I could not get into the dentist either, because she was booked, and they did not think me an emergency, when I made the appointment, last week.

By Wednesday last week, like I said, I was a sobbing mess. I could no longer medicate the pain away. It was just too much on my system. On Saturday, I was up before dawn, waiting for the clinic, in the mall up the street to open.

It became an EMERGENCY VERY QUICKLY !!!

There is a Dental Clinic in Alexis Nihon, right up the street from home. I knew it was there, but never considered walking in there and doing something about my problems, because, I knew, for the last few months, what HAD to be DONE.

There were no two ways about it.

At Fifty One, my teeth need to be replaced.

So This is a General Warning to all of you …

IF YOU DO NOT PAY ATTENTION TO YOUR TEETH AND TREAT THEM AS IMPORTANTLY AS YOUR MEDICAL HEALTH, YOU WILL PAY, IN THE END.

Having several warnings in my life, did not make any difference. Knowing people, IN SOBRIETY, who walked this same path, did not impress upon me, the importance of self-care.

But, when you know you cannot afford certain care, what the fuck to do ???

When one is stuck between a rock and a hard place, one has to accept certain truths, no matter how egregious they are.

Saturday morning I got an appointment two hours later.

I went to the Dental Care Clinic. They could not have been more accommodating.

They certainly rose to the occasion.

I was seated by my appointment time. They had done the x-rays, and in minutes I had several dentists in the room with me, telling me what I needed to know. One doctor said he could root canal the tooth and save it. That I did not need serious surgical procedures.

But I told him that the tooth had cracked and was broken, and was giving me so much pain that I could not stand it any longer, and that the tooth needed to come out.

The three teeth on my lower right side, from the back coming forwards are close together. The one tooth at the back is safe. The two teeth in front had such cavities, and the nerves in both teeth had been impacted, causing me neural infection on the right side of my face.

The choice was surgery …

A second young woman doctor came in and told me she was gong to freeze my mouth and told the hygienist that she should prep for surgery. About ten minutes later, they went in with both guns blazing.

They pulled and tugged that damned tooth out of my mouth, while I was holding onto the chair for dear life. They cleared the tooth in front of it. And twenty minutes later, the tooth was out of my mouth, and for the first time in weeks, the pain was gone.

Talk about GRATITUDE …

They gave me a second round of antibiotics and pain killers to chase them.

They took great pains to warn me of all the things I could not do, for twenty-four hours after surgery, for if I transgressed the warnings, the pain in return would be greater.

The infection in my mouth was all over the place. One round of antibiotics on their own did not do the trick, and the infection made a tour around my mouth. So after radical dental surgery, another round of antibiotics.

I’m eating on the left side of my mouth. Have been for some time now. Now, I just need to wait out a little longer for the hole to heal over completely, before I introduce food to the right side of my mouth.

The issue of what to do with the rest of my mouth is still in play. I have a follow-up appointment on Friday this week to get a full picture of the severity of my problem, because none of the dentists I HAD SEEN about implants did any kind of explorative foray into my teeth.

First they wanted a commitment AND CASH to begin the process.

I could not commit to either plan, because we could not afford to see it through to the end. And I could not, in good conscience, saddle hubby with a $50,000.00 loan that the bank would not give us even on a good day, and thinking that I would not survive seeing that kind of money paid back in full prior to my own death …

And that my friends is the latest saga in I need new teeth and soon story.

Hubby got the job, in principle, he has been working towards. Hopefully in the next little while he will get his start date. And hopefully soon after that, we may have a solution to my problem.

A Platinum Insurance plan that will cover Major Dental.

If that plan exists,  in the constellation of insurance coverage, hubby is going to BUY IN, and pay the extra costs in having that ability to help me finally.

Needless to say, hubby is clearly aware of my situation, and has had a serious time dealing with his inability to provide properly. Because I live on a fixed income from the U.S. Government and that money only pays for the roof over our heads every month. We do not get any more use out of that monthly stipend. So my hands are tied to what I can contribute to the house purse.

Being fucked sucks …

That is just the reality we live with day in and day out.

Hopefully, a solution is on the horizon. We will find it, one way or another.

Tuesday: Harmonization FAILURE !!!

world-aids-day

I have been riding a wave of feeling good, looking good, and hopeful that my medical condition was about to get much better with labs on the table coming today.

I was terribly Disappointed with my doctor visit today.

  • Yes, I have lost some serious weight
  • Yes, I have been on the Keto Diet since the end of March 2016
  • We added Edurant (HIV) medication (once daily dosing)
  • And upped my Trulicity (dosage weekly)

My HIV numbers are stellar. Cd4’s are above 1000, but:

  • My sugar test stick at the clinic was 20.7
  • My resting fast was 20 on paper
  • And my sugar number was 9.5
  • My Triglycerides were high as well (they have been see sawing for ever)

It was obvious today, that the Harmonization Tests of both types of medication have Failed. Either the drugs are conflicting still, the dosage is wrong, or put bluntly, my doctor could not find an “on paper reason” for my numbers to be so, “out of whack” today.

With serious weight loss, and corrective diet, and reworked medication, a change should have appeared on paper, and didn’t.

My doctors had a phone conference as I sat there, when they decided to test me right then and there to check my sugars, by test strip. Which landed at 20.7.

I test at home and my numbers bounce from 10, up to 20 on any given day. Even if I have a restricted diet, and I am not putting bad food into my system and I am eating a restricted diet, the numbers should be working in my favor, but they are not.

Friends have said that I need to keep my head on and wait to see what the Diabetes clinic says at my emergency appointment on Friday morning, and not jump to any conclusions.

I might need insulin corrective medication added, or just rework my insulin regulation  or they are going to change the mix again.

Some people, I have heard, cannot regulate their sugars successfully and need serious medical intervention. It seems I am at that point myself.

Stay tuned …

Thursday: Dueling Dragons …

dueling_dragons_by_shawnr22

It was a pleasantly BALMY day in Montreal today. This week, we saw temps that are darn right Springy … But we are warned that it won’t last, and that March is going to keep us in the cold for another month.

This week saw all kinds of change.

I live with competing dragons in my system. And either one can be in control, but not both at the same time. And one never knows who is in control until I drop labs. This round, my HIV is in good check but my Diabetes is all out of whack.

On Tuesday I went to clinic one for my lab drop session. Both brothers were in attendance, I got to kill two birds with one stone. The drawback is this, depending on who rules the roost, medication has to be adjusted, and you can’t adjust one side without adjusting the other accordingly.

Doctor Chris, over the years, has managed my medications very well. Because I’ve been testing drugs for him for many, many years. And if they work for me, (in our respective medical circle of drug testers), we are the main line to getting drugs approved in Canada on the whole. So what we do is very important for the community at large.

One by one, over the last five years, my twice a day drugs, have been dropped, opting for once a day dosing medication. But the Once a Day dosing takes time, because the new drugs in the pike were taking longer than usual to get to me, (read Us).

This week, new drugs came online finally. But, if you change one side of the equation, then you have to change the other in conjunction. HIV medications and Diabetes medications, don’t always work together. And I don’t know if one or the other is working well, without trial and error dosing.

If the trend drops either way, the HIV drugs come first.

If I don’t live, no other drug is going to make a difference. So Doctor Chris has to make sure that any new drug he gives me now, needs to plays nice with Diabetes drugs. This round, Diabetes lost.

A new Single dose HIV medication came online … EDURANT

Before I could take this pill, Doctor Chris had to make sure it would work with everything else I was taking already. It didn’t. Which meant my Diabetes drugs had to be tweaked.

Doctor George dropped my Janumet, because Metformin cancels out any good the Edurant will do. Which means I am down one Diabetes drug. And that was the end of that appointment.

Wednesday, I saw Doctor George at his clinic and along with his trial nurse, tried to figure out what they needed to do to make up the difference.

Three months ago, I went on Trulicity injections, once a week at a low dose. Now, it seems, that the low dose was not enough, because I am not managing well at all.

While they conferred together, I stepped on the scale and learned that I dropped ten pounds over the last six months. I knew something was up, when I put on a pair of hubby’s skinny jeans and they fit, WELL.

My Diabetes team upped my Trulicity to double the dose, weekly, along with Invokana, I have a bottle of Glyburide hanging in the wings if need be.

When I got home, I sat down with my nutritional map and planned another tweak to my diet, I am working to eliminate sugar intake at all levels. I put the new plan into action, and I have three months to see how all these changes work together.

If this series works, as it is hoped it will, I will manage both dragons better, and that is the plan. I can produce 1200 t-cells with my eyes closed. That is a given. I am over the ten year mark where my viral load is still undetectable.

Diabetes on the other hand is a capricious lady, who does not play well on the playground.

I have to test every other day to check my trends. I don’t have to prick myself every day any more. The Trulicity is a slow release, weekly dosage. Now that dosage is doubled, along with a moderated dietary plan, it should all work.

Now we dose for this observation period. And I hope to see further weight loss, and better numbers overall.

**** **** ****

Tonight’s take away … I would be ok, if everyone would just leave me alone.

How many of us got to this point before we stepped into the rooms.

Our speaker tonight got sober in December of 1994, the same year I got sober the first time, and I was reminded that had I stayed the first time, I would be 23 years sober now.

But that was not meant to be, and as he said to me, I had a hiccup.