I Am Truly Blessed

     Below is a diagram of the human foot, a remarkable feat of biological engineering.  We place all of our faith, weight and balance onto our feet everyday and I think most of the time, we take that for granted.  That is, we just assume in the backs of our minds, somewhere in the dark recesses of our brains, that our feet are just going to automatically sustain us and keep us going.  In fact, one could say that our feet surely are the foundation of our body.  Just like a house, the body needs a firm, strong foundation on which to rest;  that would be our feet.  However,  just as a house’s foundation has its problems over time, so do our feet.  If a house needs a new foundation, we can simply pour a new one and the problem is solved.  With the human foot, what do we do?  We can’t just cut them off and replace them with new ones, at least not yet.  So, what do you do when your feet will no longer hold up your body, providing a hap-hazard, unsure and unsafe foundation?  The answer in my case is not a simple one, not a pleasant one and certainly not one that I ever expected to deal with at the age of forty-seven, even with  AIDS.  

     I have undergone much medical attention lately due to a problem with my feet and ankles.  This is why I haven’t written for over a month, for which I again apologize; however, the ungodly, stabbing, screaming, never-ending pain would not allow me to even concentrate enough to engage the computer.  As I write this that pain is still there and I have forced myself to sit down and write, if not to finally try to put the pain in the back of my mind and if not for just the time it takes to write, edit and post this article.  I have been battling this problem for a year now and finally it has a name, a prognosis and possible solutions.  The solutions are not great ones and the prognosis just plainly sucks.   

     About a year ago, I noticed my left foot felt kind of like I had sprained it, although I had never caused any trauma to either foot throughout my life (remember this part, it is important).  Then, my right foot started to act up the same way.  I just thought, again, maybe I had jarred it or stepped down wrong onto something.  But, as the pain increased I knew something was not right.  So, after about one month of this I went to my regular doctor and he sent me for an x-ray of my left foot.  It came back clear.  He referred  me to a podiatrist who felt the pain was neuropathic, as I do have neuropathy.  She sent me to a neurologist.  He conducted over $5,000.00 in medical tests and informed me that I did indeed have neuropathy in my legs, which I already knew.  He could not find the cause of the foot pain.  He then referred me to a rheumatologist, which for those who don’t know, is a doctor who specializes in arthritis and arthritic conditions.   

     Now, four months have passed and I am finally seeing a rheumatologist.  This doctor is a wonderful kind of “mad scientist” like doctor, as I like to describe him.  His gray hair is disheveled, he talks to himself, you have to shout at him to get a word in, but he is highly recommended and an expert at what he does.  Besides, it was refreshing being able to talk to him like I would take to anyone on the street, cuss words included.  In a nut shell, he too was baffled.  I thought, “Great, just freaking great.  Here I am in screaming pain and no one knows why and what to do.”  This doctor, though, would not give up.  In fact, he admitted to me on the third visit that, “If I were you my wife would have told me to get a different doctor a long time ago!”  I laughed at this and told him that I was more than confident he would solve the problem.  Over the next six months or so, I kept seeing him and each time he would come up with a different diagnosis.  He had called friends, experts, UCLA Medical Center, anyone he could think of to try and figure out what in the hell was going on in my feet.  

     During this time a goal was to get me on Enbrel, an injectable drug that stops the inflammation and thereby stops the pain.  However, Enbrel lowers your immune system and since I have AIDS, he was more than cautious to prescribe it, as he should have been.  I tried three different drugs over a period of three months and no results.  He consulted with my AIDS doctor and they agreed I could take it.  Finally, some relief was going to be one the way.  I started the Enbrel and after about three weeks I woke up one day without any pain and could not believe it.  I literally pinched myself to make sure I wasn’t dreaming that this hideous, ungodly pain was really gone, but indeed it was just that –gone.  Knowing how things go for me with respect to my body, I felt if I got just some relief that I would be satisfied.  Sure enough, it only lasted about three weeks as the pain slowly crept back but this time it was worse and a different kind of pain.   

     Enbrel is specifically for rheumatoid arthritis so why didn’t it work?  Answer:  apparently I didn’t have arthritis like he thought.  I had something else all together much more sinister going on inside of my feet.  He later admitted to me that he knew something else was going but didn’t know what when he prescribed the Enbrel.  He was shocked that the Enbrel worked for as little time as it did.  I was sent for an MRI of my right foot and the results were analyzed by an expert in MRI readings of feet and ankles who happened to be a friend of my doctor.  So, we knew we were going to get the proper readings and we did.  After months of trying, three medications, x-rays and five different diagnoses, we finally had the right answer.  I have avascular necrosis in my right foot.  Avascular necrosis means that the veins going to my bones are literally dead.  There is no blood, no oxygen and not nutrients reaching my bones.  This causes holes in the bones which in turn causes the severe pain.  This pain, the doctor explained, was bone pain and that is why it was much worse than before, and I thought before was bad.  This pain  literally makes me want to vomit it so intense.  Remember,  I am on oxycontin, fentanyl and methadone and still the pain persists.  If you all recall, I have stated before that I am an “opiate sponge” as my body just sucks up pain medications and it takes a lot to get me out of pain.  However, you can only take so much without killing yourself.  Also, I have mentioned that I don’t get the regular medical problems. No, that would be too simple.  I get the weird, never-heard-of-hardly, rare conditions instead of the normal, everyday, run-of-the-mill medical problems, like arthritis.  

     Avascular necrosis is a condition that HIV/AIDS patients are now getting.  Because of the great drugs that are out there for HIV/AIDS, infected people are living longer and living more healthy.  As the body recovers once being diagnosed and given medicines, the body can start to attack itself, kind of like Lupus.  Avascular necrosis comes about as a result of the body being pretty much healthy and the virus under control.  Why, exactly, I don’t know, but this is what I was told.  In addition, .5% of people who get avascular necrosis get it in both ankles, which is considered to be a ”rare” medical problem.  But, not for Lloyd!  That would be too simple, now wouldn’t it?  The fluid in my ankles is a cloudy color.  It should be clear.  My doctor said he had never seen anyone with avascular necrosis in both ankles with this cloudly fluid instead of clear.  He had only read about it once in a medical article.  He told me that this means I am pretty much the “one in a BILLION” person to get this problem.  There is no explanation for it and there is no cure for it.  Also, almost all avascular necrosis patients have had some kind of trauma to their feet or ankles that has unleashed this condition.  I never had any trauma which contributed even more to the “one in a BILLION” person to have it.  Doing research on the internet machine about this, I came across a blog with three entries from men my age.  All of them had avascular necrosis in both ankles and one of them had no trauma at all which could had ignited the onset of the condition.  In fact, this man’s doctor had a short video about his patient and stated that in all of his career he had, “never seen a case of avascular necrosis in both ankles without previous trauma.”  This just assured me more that my doctor had found the right diagnosis and that it was indeed very, very rare.   

     The doctor told me that at any moment one of the bones could collapse and the pain would be unbearable, but also untreatable.  Great, just great.  He told me to sit down FOR THE REST OF MY LIFE and to use a cain.  That was it.  That was his suggestion?  That wasn’t good enough for me, so through some emails and phone calls we decided he was going to refer me to an ankle surgeon for a possible ankle replacement or an ankle fusion (screws holding the bones together).  Then, he calls me and has me go take an MRI of my left ankle to see what is happening in it and to his surprise, the left ankle is just as bad as the right one.  This whole time the right foot had been much worse, even though the left foot was the first one to show any signs of a problem.  When he called me into tell me the results, he thought perhaps someone had copied the right foot readings onto the left foot MRI results because the readings were identical.  Every single bone in my foot, except for the toes, has avascular necrosis.  Every. Single. Bone.  Take a look at the diagram below of the foot and look at just how many bones are.   


ANATOMY OF THE BONES OF THE FOOT Courtesy of Northcastfootcare.com


     He then began to get firm with me, knowing I would fight him, and told me that I had to stay off of my feet FOR THE REST OF MY LIFE otherwise, I would collapse a bone and there is nothing they can do about it.  I told him I would continue to make dinner, as God made me a chef and that is what I am.  He didn’t like it, but I won that argument.  In fact, I told him, “If I collapse a bone while cooking, at least I will have gone out doing what I was born to do best.”  He wasn’t happy, but too bad.  He then told me he was going to start the procedure of ordering me a scooter.  This is when it really hit me that he was very serious about never walking again.  If he was ordering a scooter, this whole thing was serious, more than I thought.  He looked at me and said, “Lloyd, I don’t know how anyone could be walking on those feet.  In fact, how did you get in here?  Did you walk?”  I told him I did and he asked me, “How in the hell did you walk on those feet?”  I responded, “In a lot of severe pain.” ” Where is your husband today,”  he asked.  I told him, “Joey is at work and couldn’t get the day off.”  He understood that, but still wasn’t happy.  He knew who he was up against and that he had to be forceful with me in order to get it through my head how serious this was.  We then discussed again an ankle surgeon and he wanted the surgery done close to home as it would be a very painful, difficult surgery.  That is, if surgery would even be possible at this point.  With avascular necrosis from the moment of onset to you realizing you are in pain is about one year.  At that point, you are pretty much out of luck with anything else other than this outcome.  

     His nurse rolled me out of the office and to my car.  When I got up and opened the car door she exclaimed, “Lloyd, you drive a stick shift?  Are you crazy?”  I laughed and told her, “What choice do I have?  This is my only car.”  She understood and I left and drove home, dreading telling my handsome man the bad news.  I knew he would call from work and ask and sure enough he did.  I asked him if he was sure he wanted to hear the news over the phone and he said, “Yes, I do.”  So, I told him and he took it well or as well as he could while working at a hotel front desk.  When he came home that night we sat and talked a lot about it.  This diagnosis meant that he had to not only work at his job, but now he had to do all the house chores and the yard work as well.  These were my responsibilities as the stay-at-home, disabled spouse.  Now I am just supposed to sit on the couch for the rest of my life and do what?  I can’t even vacuüm, clean or do laundry.  Nothing, nothing at all.  What’s worse is that my handsome man is HIV+ for twenty years.  His body will not tolerate all of this stress and work.  He will get sick, as he has before, taking care of me.  I cannot allow that to happen…..but what else can I do?  My handsome man put his foot down (pun intended) and told me that he would handle it all and I was not to walk at all, except to go to the restroom and to the kitchen to get something to drink.  That was it.  That is the extent of my allowed mobility.   

     Some people may not realize how serious this is for my handsome man.  With HIV/AIDS your body and immune system are already at a disadvantage from the start.  Just doing chores and gardening?  What’s the big deal?  The big deal is that he will become over-worked, exhausted faster, constantly tired and probably end up in the hospital again with pneumonia.  It just isn’t fair to him.  He shouldn’t have to be stuck taking care of me at forty-seven years old.  For the rest of his life, he will be taking care of me.  It’s wrong and I hate it.  I hate the fact that he has to spend these next years taking care of a crippled husband.  He, of course, does not feel this way at all.  He told me, “Honey, I took and oath that said, ‘in sickness and health…’”  He never ceases to amaze me with how much he loves me and how much I love him.  Yes, I would take care of him in a second and not complain, just like he did.  I will never know how I deserved such a wonderful, handsome man.  Without him I would be in jail, on drugs, dead or any combination of the three.  If we had never met, that would have been my fate, I assure you.  He has more love in his heart for me than anyone I have ever encountered.   

     So, I sit on the couch and wonder what the day holds for me……  The days hold pretty much nothing for me to do.  I have decided to focus on my blog which, at the same time, will distract me from the pain for a while.  I was not born a sedentary person.  I was born wired-for-sound.  I was born to run, not walk.  I was born to scream, not talk.  I was born to work hard and fast, not sit and do nothing.  I was born to cook, not to be cooked for by someone.  I was born a happy, fun-loving, kind person.  I don’t know any different but I guess now I have to learn, don’t I?  I have no other choice but to do as I am told, or the consequences will be horribly painful and inoperable.  That kind of brings it all home, doesn’t it?  Fortunately for me, I have this incredible handsome man sitting next to me on that couch on which I am stuck.  I am blessed to have him by my side and I am blessed to have two feet. I am blessed to have health care, great doctors, SSDI, The Desert Aids Project, The Aids Assistance Project, my three cocker spaniels and a family who really loves me and my handsome man.  A family that has already offered to help with the chores and the gardening, even though they are hundreds of miles away, they will come when I need them.  What more could I ask for?  Nothing, nothing at all.  I am truly blessed.   


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About justonemanwithaids

I am a 47 year old man with AIDS and happily married to my husband of 17 years who is HIV+. I have started this blog to share my experiences with the disease, to educate people about the disease and to talk about LGBTQ rights and politics. I am disabled and use this blog to keep my mind active and to express myself. I hope you enjoy reading it as much as I do sharing it.
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One Response to I Am Truly Blessed

  1. jcqwambui says:

    Lloyd, this blog is so intense.
    I want to give you hope and courage……….the doctor you have seems to be very good. You are in good hands.
    Be brave and I will continue to pray for you.
    Jacque Wambui

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