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0608.02

The Surgeon called. Go Ahead.

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News: The Surgeon wants to schedule the surgery.

I wrote down even more notes for my Therapist. This throws a whole new set of twists on weather or not I stay on med's or not and why.

In an e-mail to a friend, I said;

Well anyway - I should get back to everything else I need to get done.
I'm going to have to write a hard letter to My Friend In Jail ... I need to try and explain to him what a Platelet is, what the spleen does, why I'm going to have it removed even though it's kind of dangerous now - and try to make it sound Happy and not from a Doctor talking to college students.

When I have that written over the next few days - I'll share that here.
I have an appointment with my Therapist tomorrow.
I have an appointment with the Surgeon next Thursday. He is aiming for the 25th for the surgery. I think I can put it off another week just for the sake of scheduling a vacation to do it in.

0608.03

Therapy

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News: Today I went to the Therapist.

We discussed what I would have to do or say for him to consider the involuntary"Put me away - for my own good" for talking about Suicide or suicidal thoughts. After hearing the outlines for "clear and present danger" I went ahead and hit on every one of the criteria, and then systematically shot them down with him.
My bottom line (and he agreed)

There is a BIG difference between Suicidal thoughts, and talking about ones Death or Mortality.
There is also for his office a BIG difference between suicidal THOUGHTS - and suicidal ACTIONS.

This lead to the discussions of HEART vs HEAD - CARE vs INDIFFERENCE (or Don't Care).
In this part of the discussion we also concluded that I DO fit the criteria for Clinical Depression ~ BUT with all the environmental, medical, financial, chemical reasons accounted for; An Antidepressant was not a definite answer.
"Could an Antidepressant make you feel better, maybe. Is it an option, yes. Would it solve the problems at hand, no. Is it the answer for you ... only you can tell that, and from what I am hearing, I don't think it is. If you need my recommendation; I don't think it's necessary."

This then lead into the biggest part of MY reason for going to talk to him -
What have I been doing for everyone else, and what am I doing for myself.
He agreed that I am walking a lot of very fine lines right now ... but he also pointed out that I am WALKING them, not avoiding them, or getting tangled up in them.
He agrees that I have a lot of very difficult decisions to make in the near future, and he supports going for the decisions that are right FOR ME, not for someone else.
We then tackled part of this that I really haven't talked about much ... but when I make these decisions -

Just how much will I put up with in listening to anyone tell me that I am doing the wrong thing?
What can I do to get my point across?
How many people can I truly cut out of my life if I can't get my point across, and listening to them becomes damaging to me?
He brought up life with Dignity. The right to life as well as a respect for the right to Die.

Holding on to a miserable life for the sake of someone else is an over active part of my Caretaker personality.
LIVING a life that MIGHT end sooner, is not wrong - and I do not need (or be made) to feel guilty about it, or made to think I am a child and unable to make that decision.

This talk was quite liberating. I nearly broke down crying on the way home just because of the thought;
"I am not throwing my life away, I am desperately trying to save what is left of it!"

I have a new mind set now for going to see the Surgeon next week.
I was going to do this to shut up the Doctor's that just don't know what to do - and for everyone else that thought I should take the advice of the Doctor's. The only reason in it for me - was the hope that it would fail and I could die with a reason that everyone else could accept as 'not my fault for not trying'. ... that is still more them, then me.
This Surgeon WAS as skeptical as me earlier. Now he will have to convince me as he was convinced.

IF he CAN. I will stay on my medications through recovery and then talk to my Doctor about stopping them ~ IF it is a decision I still want to pursue then.
IF he CAN'T. I will refuse the surgery AGAIN, and talk to my Doctor about getting off the medications.

I have another appointment with my Therapist after that consultation. We can discuss more of my mind set again then.

It's time to be a little more selfish.
I am not throwing my life away. I am trying to save what is left of it, for ME.

- Something Ray said in our talk a week ago when he asked me to make this appointment and talk about an antidepressant; which I did for him.
"I just want you to give it some time." he said, and then he paused a little and said, "And I realize you have given it some time, but I think you need to give it more."

No ... honestly ... I've actually given it MORE time then I have.
What he wants is for me to give HIM more time ... for something he isn't preparing for, thus there will never be enough time.
And what he (and everyone else) is Procrastinating on - is letting me go.

PS -
We also talked about the side effects of antidepressants. We talked about my incident with Frank and the sales man.
Also what Ray said about "Most upstanding - Almost, but didn't - Trust myself"
Which brought up also the latest of my crossing the line and recovering.
I was able to make it seem like a joke and move on.

0608.05

pearls

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LIVE YOUR LIFE AS IF YOU ARE BEING WATCHED ...
JUDGE YOURSELF FIRST AND GIVE THE REST TO GOD.
Man is a harsher judge but his perspective is flawed.

-------------------------------

SOMETIMES DOING THE RIGHT THING IS HARD.
SOMETIMES IT IS AS EASY AS GIVING UP THE DESIRE TO BE HURT BY DOING THE WRONG THING.
The pain from doing the right thing is substantial, but easily more bearable.

0608.06

The Life of David Gale.

I just finished watching this movie. I remember buying it because it was a great thriller with a good twist for the end. As I watched it again now, I wrote several of the quotes down about Life, Death, Purpose, Hate.

In the end, I remember thinking that David Gale still deserved to die, for his part in the deception, and death of a loved one.
But as I sit here debating it in my mind - mostly because there is no one else here to talk to about any of this ...

David Gales life was perfect.
He lived his life as he wanted to.
He believed that life was sacred, and that man had no right to judge it, or take it from another.
Despite the lies, the deceptions, which will have any other man casting doubt on any other motive or action and the dept of all his lies and deceptions (just how much of this was an accident, or planned, and for how long?) ...
He lived his life to perfection.
To his beliefs.
In the end, he gave his life to his convictions; He gave his soul to God, and left his life (and death) for man to judge ~ right or wrong.

0608.11

Hard enough to get 2 Doctor's to talk to each other ... ... and I have 4

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News: Surgery is Scheduled - and I'm about to lose an Oncologist.

I am done talking about the decisions. I'm done defending my stance. If you want to read it (here).

September the 5th is the date for the Spleenectomy.

The office of the Oncologist - the Doctor that has been handling my platelet problems - is throwing around some attitude that I am not going to deal with any longer.
Last week, my Platelet count was 28 thousand. I was scheduled for a shot, until the Doctor had his nurse cancel it and call me to say ... and I quote "He doesn't want you to have the shot. You are good for surgery."
Surgery should not take place with a count lower then 40, and with this shot we can get it to 50 before surgery and still have it elevate afterward 'naturally' helping the transfusion they will give me during surgery. When I called and asked about that, I was told to wait and see what the Surgeon said about it.
The Surgeon and I discussed everything, and he mentioned that I should continue the WinRho until surgery to boost my platelets as much as possible.
I went directly down stairs to the Oncology office and relayed this information, had lab done (platelets were at 19) and scheduled the WinRho shot.
I got a call today saying that the Doctor (Oncologist) canceled the appointment for the shot, asked me why I was waiting so long to get the surgery, and that they wouldn't do anything but lab for me without the Surgeon's consent.
Frankly, I was aiming for the 11th, because that would have been a Monday - I could have the entire week to 'heal' before trying to go back to work, and it would have let me stay behind to cover the Store's INVENTORY on the 8th. I will currently miss the inventory, and will not have the Surgeons decision on being able to work the following week until Friday (and yes, he has told me there is a good chance I may be out of the hospital, but not allowed to go back to work for another 5 to 6 days - thus I will have to miss two weeks of work and use up all the remaining time I have for 'vacation'.)
I did relay to the nurse that the date of surgery was the first available date that worked into everyone's schedule. I then told them I would call the surgeon's office and inform them of the problem with their office.
Also, yesterday while trying desperately to get the 'scheduling nurse' to listen to anything I said (because she kept trying to schedule the surgery on a Friday and I can't leave work mid-week - and she couldn't seem to understand that WinRho is not a drug I have on me and just take like a pill - or that I am still working and can not do anything in the mornings) I also found out that neither the Oncologist, or the Surgeon had contacted either my Primary Care Doctor, or consulted Dr. 'X' (my Endocrinologist) about this surgery or any of the things or recommendations they might have concerning my Diabetes (and by the way - I am being told not to take my Diabetes' medication and not to eat for nearly 24 hours before surgery - and that I will be on a very limited diet for several days afterward) or over all care.

It's very frustrating. And it's all echoed in my little 'declaration' about my decisions.

and with that said ... I have nothing more to write about.

=============== Fate

Sci-Fi night. We had Chinese.

I picked up a fortune cookie ... then offered it to Barb.
I took the next cookie:

To light the Soul-fire, make your body sound and healthy.

Barb's :

Never depend on others to make you happy. You can do it yourself.

============================ Work Letter =====================

Boss,

I will need to take some of that ‘Vacation' time from
September 4 th to September 9th.

Surgery is scheduled for 9am on September the 5 th , with a number of
Preoperative tests scheduled for September 4 th . They want me in the
Hospital for 2 maybe 3 days. By then, Dr. Name (my surgeon) will
determine if I need any more hospital time and/or how much more time off
work he wants me to have.

Thus on Friday the 8 th , I will be able to tell you if I am coming back to work
on the 11 th , or if I will need to use the rest of the ‘Vacation' time I have left.

When I come back, I will still be recovering from an abdominal surgery, and will be
moving a little slower then usual - and probably have a lifting limitation on me; none of
which should prevent me from getting my job done.

I tried to schedule the surgery for the 11 th so that I could be present for the Inventory on
the 8 th … but I am already catching flack from one of my Doctor's about putting this off
for so long.
There should, just for the record, be some understanding that this surgery and/or the other
options involved can be threatening to my overall health both in the short and long term.
It should also be known that I am determined to see it all through on every level, and
continue to function effectively in my job.

Thanks in advance for your understanding.
If there is anything else you need, or want to know, please don't hesitate to ask.

Bret Turner
DDK
ICC/DSD

0608.22

Still not stirring ... Just Shake me.

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News: Surgery has been rescheduled - 12th of September now.

It's been a long day. I have more chemicals in me then I have had in a long time.

I was alone at work today (no trainee). I had a good day though.
I came home and Buddy had gone to school, so I gave him a ride home.
I then began an afternoon at the Doctor's offices.

1pm - I went for my pre-surgery Vaccines.
First was the left arm - (MPSV4) Meningococcal Vaccine.
     Vaccine prevents 4 types of Meningococcal disease.
     Meningitis is an infection of fluid surrounding the brain and spinal corn, and can cause blood infections.
     About 2,600 people get meningococcal disease each year in the U.S. 10-15% of these people die, in spite of treatment with antibiotics. Of those who live, another 11-19% lose their arms or legs, become deaf, have problems with their nervous systems, become mentally retarded, or suffer seizures or strokes.
Anyone can get meningococcal disease, but it is most common in infants less than one year of age and People with certain medical conditions, such as lack of a spleen.
Second was the right arm - (Hib) Haemophilus Influenzae Type b Vaccine.
     Vaccine prevents Hib disease, which is a leading cause of bacterial meningitis, pneumonia, severe swelling in the throat, infections of the blood, joints, bones and covering of the heart (many of these causing death).
     Children over 5 years old usually do not need Hib vaccine, but some older children or adults with special health conditions should get it. These conditions include sickle cell disease, HIV/AIDS, removal of the spleen, bone marrow transplant, or cancer treatment with drugs.
Third was the Right leg - (PPV) Pneumococcal Polysaccharide Vaccine.
     Vaccine protects against 23 types of pneumococcal bacteria. Most healthy adults who get the vaccine develop protection to most or all of these types within 2 to 3 weeks of getting the shot. Very old people, children under 2 years of age, and people with some long-term illnesses might not respond as well or at all.
     Long-term illnesses to consider : Heart disease, sickle cell disease, alcoholism, lung disease, diabetes, cirrhosis, and leaks of cerebrospinal fluid. Also anything that lowers the body's resistance to infection such as; long-term steroids, certain cancer drugs and radiation therapy, Hodgkin's disease, lymphoma or leukemia, kidney failure, multiple myeloma, nephrotic syndrome, HIV infection or AIDS, Damaged spleen or no spleen, and organ transplants.

About 2pm, I went to the Surgeon's office to inform them of my problems and my plans to stop seeing the Oncologist.
Those problems being: Complete lack of communication and cooperation. (And I learned something new about the situation).
     Surgeon and I agreed to continue treatment of the platelets until surgery (wanting them as high as possible before surgery).
     Usually Oncologist wanted to treat anything below 30 - but canceled a treatment with a count of 28 and comment "I was good to go for surgery".
     Oncologist again canceled a treatment with a count of 19 and asked why I was waiting so long for the surgery. It took me nearly a week to actually get a straight answer from the Oncologist's office. It end with the Oncologist himself on the phone telling me that it was pointless to treat me, and that he " ... will not treat me unless the platelets fall below 10 thousand." And he informed me that this surgery has been done with counts of 5 thousand before, they "just don't like to do it when they are that low." And that he would 'compromise' with me and schedule a treatment for the 29th (regardless of the count) which was one week before the surgery. I pointed out that it takes about 2 weeks for the treatment to take effect and I had not been treated now for several weeks, but he again said it was pointless to treat me because we were not seeing "substantial results".
     My last straw was having a count of 12 thousand, and NOT scheduling a treatment (that he would have canceled) - but getting a phone call that my Platelets were to low and I needed to come in for a treatment ASAP! (What I learned talking to the Surgeon today was that because of my messages to his office, he had called the Oncologist and talked to him about why he was not working to get me a higher platelet count before the surgery - because he didn't want to operate with anything this low unless it was absolutely necessary ... basically, the reason my Oncologist is acting this way now is because my Surgeon SPANKED him - - have I mentioned how much I like this Surgeon?).
     Surgeon didn't disagree with my decision to work with Oncologist up to the surgery, and then drop him in favor of my Primary Care Physician or a NEW Oncologist. He did however throw me a new kink, and was quite willing to work with me on it. He was going out of State for a funeral on the 2nd, and was wondering if we could reschedule the surgery. His original suggestion was to move it from Tuesday the 5th to Friday the 8th. Friday doesn't work with me, but this would give me the opportunity to be there for our inventory like I had originally wanted. We then moved it to Tuesday the 12th.

Then I went upstairs to the Oncologist (about 2:30). I informed them I was able to make it a day earlier then I had anticipated. I asked if they still wanted me to wait until Wednesday, or proceed now. They wanted to go with it now - ordered the lab work (tests drawn from the left arm) and had me come back for the treatment with WinRho (put into the right arm).
My platelets had gone UP to 13 (ha ha!) but we did the shot anyway - and kept the arranged treatment for the 29th. I also informed them of the change in surgery schedule. This gives them the option of giving me one more shot before surgery or skipping it -their call (and at this point I don't care either way).
I also stopped at my Primary Care Doctor's office to inform him of the change in surgery - because now it's a day before my scheduled appointment.

I made it home at 4pm. ... Only the right arm is sore.

Last thing to observe.
Diabetes - glucose levels. I haven't been actually testing them, but decided to start before the surgery as a marker. I would appear to be running high anyway.
Daily Glucose Readings

Quote of the day -
"Is this the first problem you have had with this Doctor?" she asked.
"Yes. But he continues to not work with me about it." I replied.
"Shouldn't you just forgive it and move on?"
"No. This was the first time I needed him to act like the Doctor I needed." I explained.
"I just don't understand why you don't keep him if he's been fine before now."
"It's kind of like saying 'that is the best fireman I have ever worked with ... as long as nothing is burning.'"

0608.23

Right arm and Right leg Hurt like hell I'm very tired

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News: ... uhmmm ...
Right arm and Right leg
Hurt like hell
I'm very tired

Slept all afternoon ... and I'm sure I can sleep all night long.
I did have all my labs drawn today.

... and I heard great news today ... and it's a secret.

Two other things ...
My Boss pissed me off today in a subtle way. I was telling him the 'good news' about the surgery being pushed back and that I can now be there for inventory.
"Now why the hell would you do that? I just want to get this all over with!" was his reply.
Get what over with? All my vacation time? My job? My life? Because there is no way in hell that he is at all concerned with me or any of my problems - hell, to the best of my knowledge, he doesn't even know what this surgery is for ~ or care what the risks are. The only way this has affected him, is having to schedule someone to train with me so that my job can be covered for some scheduled time off (something I have pointed out to him should have been done - and maintained - long ago because he will eventually have to cover unscheduled time off).

Watched 'Criminal Minds' tonight. I don't usually watch it ... I really like Mandy Potamkin though.
Very touching episode.
"What we do for our selves dies with us. What we do for others remains and will be immortal."

If you have any comments or feedback - please tell me. misfit@misfitslife.com

I was originally writing it for MFIJ, but thought about posting on the web site, then decided that by the time I got it written, I would have made the decision anyway. So, why write it when it's for your acknowledgement, not your approval - and more for me?
Because, it was for me.

These decisions where hard to discuss with anyone, including my therapist and Doctors, for many reasons - most of which varied from who ever I was talking to.
Here is the biggest reason: ACCEPTANCE.
How many of you know or remember the psychological stages that one goes through in the process of “dying”?

Anger - Denial - Bargaining - Depression - Acceptance.

I've been up and down this scale just a few times in the last few years. All things considered, I reached Acceptance back when I was 16 and came to terms with being MORTAL, so I didn't have a lot of work to do when I found out I was HIV positive or with anything else that followed.
The problem with having reached Acceptance - it is so rare that the others around you have reached it also.
The process for someone else coming to terms with someone ELSES mortality is called GREIF, and it begins with the loss, not before it.
So, in the long run, as I try to talk about problems that deal with my mortality, I met with resistance and I am dragged back through every single one of these steps again - Especially DENIAL (and Anger). But I am here to tell you, not only CAN I die, I WILL die - and there is nothing you can do to stop it.
What seems to me to be the hardest part for others to understand about Acceptance is that it does NOT mean I have given up. It only matters in HOW you fight for, and enjoy, your life. I am not throwing away my life, nor have I stopped fighting for it, or living it. In fact, despite the feelings to the contrary, I am truly trying to save what is left of it - for ME.
Most of you know of or are fans of STAR TREK - so I will use the infamous analogy of the Kobiashi Moru test. The “Unwinnable” situation, with the quote;
”How you face Death is as important as how you face Life.”
Accepting the inevitable, is not giving up to it - but it can change your strategies.
I have no control over other people's feelings.
I can only try to have compassion and understanding toward your feelings.

For the rest of this letter I will assume you are at least in Bargaining and make you this deal: I will acknowledge that you do not WANT me to die IF you acknowledge that I WILL die.
This will at least give us a common ground on which to understand the alternatives and there inevitable conclusions.
If you are unable or unwilling to make this bargain - put this letter down and stop reading. You will not get anything from it, and you will not be able to give any kind of rational input.

<I chose to stop reading>

The Problem at hand - immune thrombocytopenic purpura (ITP)

What that means - a bleeding disorder characterized by too few platelets in the blood. This is because platelets are being destroyed somewhere in the body, most likely by the immune system (again, most likely in the Spleen).

More accurately I (and my Doctors) should call this Idiopathic thrombocytopenic purpura, because Idiopathic means the exact cause of the disease is unknown.

Bottom line - I don't have enough Platelets.
Information to be considered - We have done a test to show that I am PRODUCING platelets … they just are not surviving in my blood.

What are Platelets -

Approximately 55 percent of blood is plasma, a straw-colored clear liquid. The liquid plasma carries the solid cells and the platelets which help blood clot. Without blood platelets, you would bleed to death.

Platelets are irregularly-shaped, colorless bodies that are present in blood. Their sticky surface lets them, along with other substances, form clots to stop bleeding.

When bleeding from a wound suddenly occurs, the platelets gather at the wound and attempt to block the blood flow.

A clot begins to form when the blood is exposed to air. The platelets sense the presence of air and begin to break apart. They react with the fibrinogen to begin forming fibrin, which resembles tiny threads. The fibrin threads then begin to form a web-like mesh that traps the blood cells within it. This mesh of blood cells hardens as it dries, forming a clot, or "scab."

A scab is an external blood clot that we can easily see, but there are also internal blood clots. A bruise, or black-and-blue mark, is the result of a blood clot. Both scabs and bruises are clots that lead to healing.

Why is this a problem?
A normal Healthy person should have between 150 to 70 Thousand platelets in their blood. Anything below 40 Thousand and you are considered a “Bleeding Risk” and no surgery will be performed without precautions (such as a transfusion of platelets, or drugs used to help boost platelets).

I have since my diagnosis in November of 2000, been consistently below 50 thousand, and most recently in the last year consistently below 20 thousand (my lowest to date is 8). That is very low, and it has been that way for a long time now.

The primary risk here is bleeding (to death).
Any kind of bleeding that will not stop because the platelets are not there to form a clot, and begin the repairs to the wound.
Thus also in the long term, other risks include;
Improper healing, or repairs which cause a weakening of the circulatory system.
Symptoms and risk here include;
Bruising, spontaneous bleeding, any rupture or blockage that could result in a stroke or heart attack, paralysis, brain damage, loss of sensory perceptions, or even death.

Bear in mind again, for 5 years I have consistently been below what would be considered a bleeding risk.

What are the options?

1) Let it run its course (or Do Nothing). This meets with a lot of resistance - but try to remember our ‘Bargain'.

2) Treat it with Drugs.

• The initial treatment is usually with a drug called prednisone. < First avoided for the cost and the Steroid problems it could cause the immune system. Now avoided because of the Steroid problems it will cause my Diabetes …
• Oral danazol < This is what I have been doing - and it no longer works …
• Drugs that suppress the immune system < With long term HIV … this is already accomplished, and not wise to consider …
• High-dose gamma globulin injections < This is what I am doing, but it is time consuming, EXPENSIVE, and is never considered a long term fix - usually just as preparation for a surgery …
• Passing the blood over a protein A (Prosorba) column , which filters antibodies out of the blood stream < Not something my Doctors have brought up, which leads me to believe that is unavailable to me, and most likely also time consuming, expensive, and not considered a long term fix …
• Anti-RhD therapy can also be useful in people with specific blood types < Not something my Doctors have brought up, which leads me to believe that is unavailable to me …

People with ITP should avoid taking aspirin, ibuprofen, and warfarin because these drugs interfere with platelet function and blood clotting, and bleeding may occur.

Now you know why I have not been able to take Aspirin and Ibuprofen for a long time now.
I should also point out, that most of these are supposed to be options used AFTER the option I am now going to have to consider.

3) A Spleenectomy (removal of the spleen) is sometimes advised. The spleen is the major site of platelet destruction, but removal of the spleen will only bring up the platelet count in 50% of people.

What is the Spleen?

The spleen is shaped like a loose fist and is tucked under the left side of the diaphragm generally weighing under a half pound, and is part of the filters in the immune system.
The spleen is an organ that is mostly responsible for the destruction and recycling of old red-blood cells and is also a blood reservoir (supplying the body with blood in emergencies such as a bad cut). The spleen is also the location where white blood cells trap and destroy organisms.

If you want a bad analogy; the Spleen is the back alley where the immune system takes the bad guys and ‘gets rid of them'. It isn't necessary (like say a Jail), but it works in a pinch.

The Surgery:

In and of itself, the surgery is nothing to worry about. Depending on what might occur during surgery (possible bleeding, problems with other organs being ‘in the way' or the spleen being more connected to other organs, or the spleen itself being misshaped), I will have a scar on my stomach about 1 to 3 inches long.
Recovery from the operation should be rapid. Hospitalization is usually less than a week (1-2 days for laparoscopic Spleenectomy), and complete healing should occur within 4 to 6 weeks.
Laparoscopic = A camera on a tube. Meaning that the hole can be much smaller and thus less time is needed to heal.

Expectations after surgery  

All patients undergoing Spleenectomy should be vaccinated against pneumococcal pneumonia. In addition, some physicians recommend vaccinations against other types of bacteria, and, especially in the case of children, long-term treatment with antibiotic drugs to prevent posts sepsis.

Definition  : Sepsis (or Systemic inflammatory response syndrome (SIRS)) is a severe illness caused by overwhelming infection of the bloodstream by toxin-producing bacteria.

Consult your physician regarding an appropriate vaccination regimen. Long-term antibiotic use is usually not necessary in adults.
Any patients who have had a Spleenectomy should seek medical attention for even seemingly minor illnesses, such as sinus infections or sore throats, as the health care provider may wish to prescribe antibiotics.

Let's simplify and bottom line those options again.

Drugs have been tried, and are now failing.

Surgery - which has a 50% chance of solving the problem with Platelets … but will hurt my immune system , something already affected by HIV - and the drugs I have been taking for it.
It might buy some time from one problem, but cost me some time on others.

Success means; there is no telling for how long this will work, or how much more I will have to do in order to boost what remains of my immune system.
Failure means; I still hurt my immune system and have already exhausted the drug treatment which puts me back at the last option -

Do Nothing … Let it run its course.

As if this situation didn't seem “Damned if you do, damned if you don't” enough … I have to add one more consideration into the options here.

HIV medications … Keep taking them, or stop.

I have never liked taking medication.
Even before having a reason not to take things like Aspirin, I didn't like to take it.
Medication is meant to be a crutch, not a cane.
A Crutch serves a purpose to aid in healing, and then is discarded.
A Cane is a permanent addition or a replacement to something that will not come back.

I took HIV medications to make everyone else happy. Not because I wanted to.
Doctors said it was the only thing to do. Everyone else agreed, and there support always seemed to come in the form of “You can tolerate this drug, you can make the changes in your life to keep taking this drug, we can help by reminding you to take them, get you what you need to be able to take them…”
When I first resist the idea of taking medication, and every time I have ever mentioned stopping them I have met with resistance from everyone that cares for me.
”Don't throw your life away! Take the pills and live longer! - You can LIVE with this drug.”

I did it for everyone else. Anywhere between two to five times daily there was a physical reminder that everyone could see that I was ACTUALLY making an EFFORT to survive.
For me, it was a way to keep everyone else happy and quite so I could focus on my own life with out interruption. No one else seemed to care that two to five times daily there was a reminder to me that everyone else felt there was something wrong with me, or that I was not happy taking them, or feeling good because of them.

I will remind everyone now that over the past 14 years with medication, I have never had a problem caused by HIV. Every health concern I have had has been tied to my medications, and been solved by stopping, changing or adjusting that medication.
I have dealt with headaches, nausea, dizziness, fatigue and possibly even the depression in increasing duration and intensity. I have had permanent nerve damage in my feet. Chronic liver problems are developing from constantly filtering out the toxins that these drugs produce (which is what I believe has also happened to my pancreas - causing Diabetes, and my Spleen - causing my current problem).
How many of you have been around during one of my “Drug Vacations” - a medically supervised and strategic stopping of the medications to give the body a rest? Occasionally it has been know to happen that I skip a medication(s) for a day.
Have I been the only one that noticed how much better I felt? How much more energy I had?

I will liken these medications to cigarettes. How many of you smoke, and suffer for it? How many of you tell other smokers they should quit because it is slowly killing them and they are throwing there lives away by doing it?
Yet some smokers go through cartons a day and live for decades. Others, one or two cigarettes a day, and die in years or months.

These drugs MAY have extended my life - but at what cost?
I recently wrote to someone after returning from the Doctors, that my Lab work was terrible! My Doctors all comment that I was in great shape for someone that should be very sick or dead already with the kinds of numbers they were looking at. And yet, I still go to work 6 days a week, and rarely ever miss a day. I am ‘healthy', able and motivated to live the life that I have been given.
”It just goes to show it isn't what is in your blood - it's what is in your heart and soul that keeps you going.”

I want to stop taking these medications.
I am not really sure that I can, because like stopping smoking - there are some ‘withdrawal' issues to take into consideration.

If I continue to take the drugs, eventually they will fail like all the others in the past have (I have been through everything on the market now, some twice). Regardless of how well they work, HIV will still be there, at some rate causing damage to my immune system.

If I stop taking them, this process MIGHT be speed up some.

I have been continually asking myself - how much of this am I doing for myself … and how much am I doing for everyone else.

In the end, I have to consider what will stop the emotional suffering I feel. Something which has been ignored, denied, or glossed over by everyone that I have talked to (except my therapist, who is trained to listen to it).
I understand how hard it must be to believe that there are currently only three things in my life. Work, sleep, and sorrow.
When I say Work, I not only mean my JOB, I mean everything else that I have to do like paying bills, keeping my house in order, obligations I have taken on (like helping others or the web site) or have been thrust upon me (Like dealing with all these Doctors, prescriptions and appointments).
When I say sleep, I don't just mean that I close my eyes in bed and dream. I am talking about the fatigue that has caused me to sleep closer to 12 hours a day, rather then 8. The fact that I am always tired and trying to get some kind of rest.
And when I say sorrow …
Many have wondered why they are seeing and hearing less and less of me. That is because the shining moments when I am not gripped by one of those three things are the only things I truly want to share with anyone else, and those moments are getting smaller and farther apart. To be truthful, many of them have been faked lately, because I am doing ‘it' for someone else.

No one but myself is to blame for any of this.

The choices have always been mine - and I live by every one of them.

So, here are the options I face, and hold up for your recognition (not approval).

A) I refuse the surgery, and talk to my Doctor about stopping the medications - and let everything run its course.

B) I accept the surgery, stay on my medications in order to aid recovery - and follow Doctor's advice in order to assure as full a recovery as possible.
1) After recovery, once again consider myself and my situation and consider stopping medications … whenever that might be.
2) Muddle through declining health until the inevitable, and only consider stopping medications in an issue of quality over quantity of life (and Quality will win).

I will at this time also admit that Option B still has an element of “Doing it for them - keep them quite by making them think I am DOING something.”
And also the hope for failure.
Option B gives ‘others' the security of thinking I DID everything I could and I lost with a reason you can understand; versus the idea of option A that leaves ‘others' with the feeling I just stopped trying and let myself die.

….. I will Be Positive in all things (and all puns are intended).

Surgery is scheduled on September the 5 th .

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