A Synopsis: From Then to Now

My Shoulder

My name is Alexandra Albin, I am what one would call an "e-patient" – which can be construed as a patient who is engaged, electronic, empowered.

I have an orthopedic condition called avascular necrosis – aka, Osteonecrosis: a painful bone disease which essentially results in dry rot of the bone which can lead to collapse. It is due to loss of blood supply to the bone and, in my case, a result of medications given for a misdiagnosed condition of Multiple Sclerosis. "Why?" is another question, but there is no clear answer.  I have had 15 ortho surgeries and am currently both recovering from and preparing for another. Goodness knows why, but I keep trying to save my bones and preserve my mobility. Call me crazy. I was coming to terms not going to the Healthcare 2.0 conference in SF due to the competing priorities of my health and/need for timing my ortho surgeries for a host of entangled reasons, when I saw a post by @Regina Holliday about her #walkinggallery event. As I was wallowing in my misery, I asked her to make a jacket for me so I could participate in abstention. Read Regina's blog to learn more about her moving patient advocacy project. She asked if I had a post about all the surgeries I had and I realized I didn't. So...that is the beginning and end of this tale.

The Past:
In 1994, following a whole lot of life changing events and a sudden kidney infection (sudden in the sense that I did not realize it until I was really sick), I was ultimately diagnosed, by a highly reputable Neurologist in Santa Monica, with MS. I had odd symptoms, like a paralyzed bladder. I was not be able to void even with a bladder filled up to 800 cc. I had to learn how to self catheterize. Ultimately things got worse, I started to lose balance, among other odd things. The Brain and Spinal MRIs were all clean. Dr. Sheldon Jordan, based his diagnosis of my abnormal evoked potentials and my medical history (there had previously been odd neurological events). One of the several spinal tap tests were positive with white blood cells.  Long story short: as things deteriorated, Dr. Jordan recommended having a Solumedrol Dose Pack for ten days; that involves daily three-hour drips, administered at my home. This was followed by tapering dosages of prednisone. That was one of the most awful periods in my life: literal hell!  I was 34. After getting my career going I had suddenly become unfunctional and was taking drugs that jacked up my body and made my mind crazy. I became highly compulsive, angry, couldn't sleep at night (due to the speedy affect of the steroids) I had my entire apartment rearranged and had my piano brought home so I could relearn how to use my hands. Things got so bad that I couldn't hold a cup without dropping it. I ended up in a wheelchair for quite a while. And, adding insult to injury, I developed the classic side effects from taking steroids, gaining 20-30 lbs. Luckily I was surrounded by a ton of amazing people to carry me through a very dark patch of life. Then life moved on and I regrouped, and was back on my online educational career path. I had minor intermittent episodes of some weird neurological issues, but ultimately all resolved. I did do Beta Interferon for several years – to the tune of $1500 per month. (Thank you Dad)

The Middle:
In 1997, I  started having pain in my legs, and thought that they may be MS related. Then we started going around to different neurologists to figure out what was going on. I ultimately saw an Orthopedic surgeon and a Neurologist the same day up at UCSF. The ortho said, "Well, you have this condition in both hips called Osteonecrosis...where the bone dies." The neurologist said, "Well you don't have MS, but now you really have something." So that became the medical issue of the moment...little did I know it would last fovever. Since both hips had this condition, the verdict is that the blast of steroids caused it.

That started the very long curvilinear process that has lead me to Now. And, the long and the short of it is that I have ultimately end up having over 15 orthopedic surgeries over the years, on hips, knees, shoulder, elbow, wrist to save my joints. All the lower limb joints have been directly related to the bone disease. The upper limb ones are unclear.  Some joints were worked on several times, others once. Most have been bone preserving.

Most of the surgeries where performed by doctors in Colorado, who I accidentally came across in 2000 because one local Dr. had the guts enough to say to me (when I learned that I had AVN in knees too), that I should not see him or any other local and go to Dr. Steadman in Vail Colorado. And, since then it has become this weird second part of my life. Some people have go to their Mecca. I have the Steadman Clinic in Vail, Colorado. Other surgeries have been done in California. I have gone to the East Coast, up and down the West Coast to find top orthopedics who could deal with my issue. One of the specialists I saw in Baltimore (who has written lots of papers) was more concerned that I had not been referred to him by Doctor Steadman ("doesn't he know who I am?"), and that I had a pre-publication version of his article. He then recommended two surgeries, back to back – just days apart on both my knees. So much for Baltimore. (I don't care how talented you are). I was sent to Dr. Bugbee, in San Diego, because Dr Steadman wanted a second opinion before he and I started our series of knee saving surgeries.

My FVFG

I have had a host of different types of surgeries....I have had arduous recoveries and those that were a breeze. The first surgery was bilateral hip surgery with no weightbearing for 3 months. That was awful and dumb in hindsight. Ah Youth!  I have had wildly experimental surgeries. In 2001 I had what is called "Free Vascularized Fibular Graft," where they harvested most of my fibula and implanted it as strut to hold up the hip head while providing a new blood supply. (you can see my missing Fib in the standing Xray pict above) That was a difficult  9 months recovery. Other experimental surgeries include one by Dr Philippon, when he implanted an OBI biomatrix plug (bioabsorbable bone graft substitute) to repair the large lesion in my femoral head, along with a series of microfractures, similar what they are now using in Rat models for growing bone parts using stem cells. AMAZING! (But, that did not work so well in me. Nearly two years  on/off crutches = grouchy!).  I have had a lot of microfractures, spent lots of time in a CPM machine, tried HGH, drank worm juice tea (chinese herbal recipe), acupuncture, ultrasound to help stimulate bone growth, had several PRPs (Plate Rich Plasma injection...a lessor form of stem cells... full of growth factors). I even had conventional procedures like a total hip replacement by a top orthopedic, whose "speciality" is failed hip replacements. That one didn't go so well: I now have a constant and pretty intense pain in the middle of my femur from a condition called "end of stem pain", that is a whole other story and series of problems.

Acupuncture time!

I worked through most surgeries; once while I was being rolled into ER they realized my laptop was still plugged in. I had to ask them to wait. I even went on an extended two week business trip all over India on crutches. Mind you, they don't do handicap very well there. They don't have elevators in most places even airports. The solution was to have me carried in my wheelchair up stairs and to the plane by a team of men. Imagine doing that while traveling with the VP of  a multi-billion dollar company and your boss. That trip was my career undoing. Once I was home in the US I ended up in the hospital throwing a clot. OY! It became my body or my work. My body won.

One Year of EOBs 

My Medical Records

Since that fateful trip in 2007 I have become a full-time patient. It is my job. It is my career. I often use the term I am the CEO of my body. I have learned the hard way the ropes of being my own advocate. Have developed enough confidence to make difficult decisions about a condition that is not well understood. I have had to scratch, fight, and claw for my rights as a patient, from dealing with the medical to disability insurance quagmire. I have also had amazing humane caring moments with caregivers throughout the medical chain and made friends in the process.  I have learned more about beauracratic issues related to a chronic illness including CPT and ICD9 codes, dealing with those marvelous EOBs, how to get your medical records, how to correct coding issues, know what your insurance approves and disapproves of, and appealing a denied procedure (like my $33K Femoral Acetabulum Impingement (FAI) surgery that was denied by my medical insurance company – the same insurance company who sponsors the research that Dr Philippon is doing. As you enter the Steadman Clinic you see the "Aetna Hall of Champions" over the hallway with Athletic Jerseys  lining the walls thanking the Drs for saving their careers.  And I have had to deal with the whole package around what laws govern your insurance company and what rights you have to appeal decisions based on how your insurance plan is structured (ERISA anyone?).  I have been nearly buried by my disability insurance company that tried to deny me coverage and even place surveillance cameras on me and my house. I have run the gambit of dealing with the Doctors' egos who think they reign supreme, or who don't like someone who asks questions, or  misdiagnose you, or when they plain old run out of ideas (and don't have the guts to say so). I have learned that you can have good surgeries by mediocre doctors, and bad outcomes by top doctors.  I have fully come to appreciate the fact that medicine is a hybrid of science, art, and human nature (the good and the bad). I have also learned that feeling safe with a doctor or clinic (whether or not they have all the answers) counts in spades. And, run when you don't really trust what you are being told or who is telling you (although that taps into that second guessing yourself piece, which I do a lot).  And, I know I have still so much to learn.

In between and On the way to surgery

To wrap up this long tale...I am getting ready for another relocation to Colorado for surgery and recovery for 2 months. This is not the life I planned, but it is the life I live and I am doing what I can to keep it interesting and take the best care of myself that I can.  Who would have thought being a patient could open up so many different journeys from deep sorrow to moments of epiphanies,  triumphs, and connections.  In that process I have really enjoyed becoming apart of the larger movement of the Epatient community on Twitter, FB, blogs, wherever. I never was much for support groups other than to data mine. I even joined the Society of Participatory Medicine. I thank so many people, near and far,  for  getting through this thing call life and for helping me take my story a little further than myself and raise it above the immediate. There times when that is tough, but that is the ultimate goal. And, I thank Regina for prodding me to consolidate my story in one place. Now, when people ask me I can say... Hey: read this long post...

I'm Back....sort of

I have really fallen of the patient advocate sharing wagon. Sometimes, dealing with life is such a handful that it takes all your energy to focus on tasks at hand rather being able to bring the experiences to a larger community context. Oh well, I do bite off more than I can chew sometimes. So, I am going to make an effort to simplify and do smaller writing/sharing exercises. Have no idea if it is possible or I an do it, but certainly will give it a college try. Got to start dealing with docts again and make decisions about what and how regarding potential new surgeries. All I can say is #wtf. It is tough when doctors simply look at you and shake their head saying how "unprecedented" my case is. That was the last two weeks and so I just closed my hatch to recharge and regoup. Ok...so now, I am sort of back.

The second guessing yourself game and the Havoc it creates

Finally, I am going to get a lightweight wheelchair. I cannot believe that I am so excited. But I am. Mostly because of the satisfaction that comes along with it.

I started battling for use of a wheelchair during my recovery over 3 weeks ago. That was when I was told, at the hospital by the discharge planner, that was a durable medical good that was not covered by insurance, along with the shower chair, raised toilet seat, and wheelchair cushion. This was after I spent a great deal of effort to determine what my policy covers. I even, in the hospital, spent hours highlighting the insurance document to show the discharge planners what was covered. Something that they never looked at. Something they pushed me back on. And, a discussion I crumbled on, and nearly gave up the fight, mostly, I just didn't push for what I really needed (a light weight wheelchair). I accepted the 2nd best option – any old wheelchair. And, that was not very good for any of us. So, since we got it I re-geared myself up to getting a light weight one. And, I have. And, it is covered.

So, what is the takeaway. Don't second guess yourself. Don't doubt yourself, especially when you know what your rights are (as I knew by my insurance company's medical policy bulletin covering durable medical goods). It is easier to doubt yourself when you are not feeling well, especially in the face of pressure and a system that seems to run on denial. I know I buckled. 

The good thing is that I regrouped, but it took 3 weeks longer to get what I should have gotten. Had I stood my ground I wouldn't have wasted the additional time (at least 8 hours in total) – day's wage – to get the right goods. So, next time I will stand my ground. 

I wonder if other people do this?  Maybe I am the only one, but I doubt that. HA!

Share if you have similar stories.

When you don't look the part

During my last several hospital stays I have taken to wearing a camisole (helps hold up the chest) and loose yoga capris after the initial surgery etc .... instead of a hospital gown. And, boy has that caused a stir to the point of eliciting comments from caregivers.  "Wow, you look like you are ready to leave." (on day 2 post surgery, while I am shuffling around with my walker). Or, you don't like you have anything wrong with you (What about all the IVs that are sticking out of me?). 

I don't think people say these things to be provocative. I guess I get provoked.  Sometimes I take it as minimizing my suffering or what I am going through. And, I do the same thing. I try to look like and act like there is nothing wrong with me so that I can pretend that there is nothing wrong. 

It does raise the question/issue of how linked people's perception are to being sick, including my own. You have to look sick to be sick. It's weird. It is almost as if, the legitimacy of struggle/illness gets reduced when one does not look the part. That happens to me on a regular basis. When people see me in person, check out picts, especially when I do not have an aid in hand (crutches, wheelchair, walker, cane) then I must obviously be OK.  "Oh, you must be doing better." When in fact, I often don't use a cane, because it hurts other joints, or I am too lazy, or whatever reason. I am in constant pain in so many places. But, because I am athletic looking, thin, long legged, I must be ok. When I went to the hip replacement class, prior to my surgery, two separate nurses checked to make sure I was in the right class. I insisted that I was. It depressed me, or should I say enraged me. It even makes me second guess myself. ..." Maybe I really am OK, and have no problems, or have lesser problems than I pretend I do ". When I allow those sentiments to grasp hold of me it can be deadly to the psyche and hurtful.

Its a conundrum. One of the many that I have had the pleasure, so to speak, of tackling in the experience of being a patient.  Mostly I have come to accept the frustrations of my condition, there are times, especially when I am fragile that I react. But overall I have gotten to accept the humor in it all and so try to find the comical. 

If I find myself needing to react. I slyly ask people, "Didn't your mother teach you not to judge a book by it's cover?"

If I didn't I would be in a very unproductive place.

More about Medical Bills and the Insurance Morass

Following up to my rant/post yesterday I want to share two articles on dealing with the medical bill morass.

The first outlines some of the important techniques that can be successfully employed to help reduce out of pocket costs. It comes from a real life experience of a couple that tackled their spiraling costs. I have used a number of the techniques and it mostly works. Sometimes, like I said yesterday, it is random based on who is on the other end of the line. So, it always good to try and try again. 10 Ways to Cut your Medical Bills

Another article a couple of days ago addressed how a family member stepped up to help advocate for her brother. Negotiate Your Medical Bills And, through Htzpah, persistence, looking over an itemized bill for a hospital visit (that is enough to make anyone sick) -- Crimminy, up to $10 for a Tylenol pill. It is a sad state in this country that we have come to this.

In addition to some of the techniques identified I use the following:

1. Always, Always, keep notes for each conversation. Write, the date, who you spoke to, what about, and followup action item. This is useful when some action agreed to does not happen (no matter who it is) you can leverage that they said that they would do x, y, and/or z. Lack of Followup is great leverage.
2. When you review a bill, there are CPT codes associated with the charges, if the charge has been denied by your insurance company, find out why, then go back to the provider of services and see if they can legitimately change the CPT code (sometimes they can) and re-bill.  That has helped save me money in a number of circumstances. Each insurance company has slightly different policies and coding. I am beginning to see this as a new pattern.

If all this too much to do on one's own, or if, one doesn't have a family member, there are always professional advocates, who charge a fee, however, the reduction of stress of dealing with, let alone understanding, EOBs ( "Explanation of Benefits" for the luckily uninitiated), medical bills, insurance policies, and negotiating down the bills, may be worth the up to $80/hr fee some people pay. Benefit Advocates Help Reduce Fees.

Those are my hot insurance billing tips of the day. Good Luck and give a shout if you have further suggestions or need help.

6 days Post OP -- Ok so now it is 7 days -- now it is 14

Well, this has been a long haul. It is hard to believe that just over 6 weeks ago, I/we were put in the position to make the decision to come back Vail for and unplanned surgery. This was quite a surprise for someone who nearly schedules their life around surgery. Sad but true. On the left is what the livingroom looks like in the morning after I "scrabble" out of bed to head to PT. It has turned into central recuperation station.

In synopsis, the shit hit the fan July 18th. 

So since then, we (Larry and I) have been grappling and scrambling with many complicated issues from setting up the house to be taken care of, along with Enzo, addressing changes in the kids visitation weekend, getting a house sitter, fixing the frigging leak in the pond, blah, blah blah, getting a gardener so that I don't loose the garden I started.  It was like being squeeze through a tiny hole that neither of us were small of enough to go through. But, thankfully, despite multiple hiccups we made it through and I am here 6+ days post op and doing fairly well.  

We literally left California, on August 18th, 1- not knowing if my disability payments would continue and 2- whether the surgery would be covered. (That was stressful). Thankfully point 1 was resolved, only because I was having surgery. Apparently one of my many doctors actually submitted a report stating I was capable of sitting continuously for 6 hours a day. And, to top it off, he charged me an arm and a leg ($800) for one office visit, of which he will not write off any amount. That is insult to injury. The insurance battle is one left for me to address once I am a bit more clear headed.  

We arrived in Vail nearly 2 weeks ago, Monday. I had four days to get the condo -- 2 + multiple loft bedroom and 2 bathroom condo together so that it was functional and less cluttered. One of the challenges of moving into a fairly high turnover unit is that there is chaos in the kitchen and furniture is packed in. Additionally, there were many other mechanical issues we needed to address so that we could have a dining table and chairs that would hold together -- for that we worked with Ellen Eaton, one of the owners of  Smith Eaton Real Estate who is on the ball and responsive. I would recommend her. And, since I am particular and need a certain feel to the environment I could not rest until things were workable, down to setting up a makeshift office space. We went to the Thrift shop, Walmart, and local consignment shops to setup house just so. And, we made it under the wire, when I got on my bike Friday morning to get to the hospital for surgery.  

Now, ten plus days later, any many physical therapy sessions later (2xs a day seven days a week). I am beginning to be more clear headed and able to do something other than be attached to machines all day long, which is currently mostly the case. 

The Highs and Lows

So the shit hit the fan, so to speak, and my life has gone into quite a spin. A very different spin than I was planning.

At the tail end of my visit in Vail, co, with the fabulous medical folks, it surfaced that I have a major problem in my right hip now. I always knew I would have to contend with it at some point, but I was not planning now, in front of other scheduled events, including my wedding, followed by my planned shoulder surgery. Alas, my fucking hip has trumped everything. It was a weird experience. I got our of bed one morning to discover that I had consistent pain in a new place. I even got confused between my right and left leg. It was really disorienting. After quick Xrays, followed my an MRI the same day, followed by a consult with Dr Philippon and Dr Ho (radiologist) Saturday morning it was made clear to me that I had to address the right hip sooner rather than later. Quelle Drag!!!

Because we are not wealthy and the weather starts getting burdensome starting at the end of Oct. we have come to the dear realization that we need to hit the road and get out there so that I can have one of three pending surgeries (unless something else crops up), possibly squeeze in two. This is fucked up! This avascular necrosis stuff is for the birds. As such, so I can maximize my time out there, we need to postpone our wedding, at the end of September, and pack our bags and leave in two weeks, so we can squeeze in a trip through the northern US, I have always wanted to go to Wyoming and Montana to the Grand Tetons and Yellostone. So, that be the plan.

On the semi backwards good news front, I was awarded SSI, and received retroactive pay. I cannot believe, given how notoriously difficult the system is in awarding disability, that I got this in 6 months. OMG. I have heard it often takes years! This is good news, but it does seem strange to be happy that I have been considered officially disabled, by our federal government, so that I can receive benes. At least that relieves some of my pressure, and that is a good thing, as Martha says. So, with that news, I am quite done with the harriedness of the last 3 weeks.

Now, we prepare to move on, figure out the next steps, and find the good things in life....like a road trip through big sky country. I get to spend time in the Rockies (one of my favorite beautiful places), and hopefully bring Enzo.

So, there......bye for now

Beat as a Dog

I cannot even see straight these days I am so overwhelmed with decisions. I dislike the position I am in, however, somewhat resigned. I am not sure if that is a good or bad thing. Probably does not matter. Sometimes when things get rough, although you have lots of booming ideas in your head it is difficult (or, more so exhaust) to actually share and diseminate those thoughts. Sometimes all you can do is go inward and hope that you will find safe harbor.

Since Vail I have been trying to figure out the best way to navigate new decisions and waters but I am simply still bobbing along waiting for a sign that we can figure this out.

Back in Vail Again

It has been a while since I posted. I have had so many topics I have wanted to cover, but alas, life took over. So, I am writing this as I am sitting in the waiting room at the Steadman Hawkins Clinic waiting to see the doctors -- Dr Steadman and Dr Millet today. The doctors and physical therapists here are the best I have ever met. There is a level of consistency in the quality of treatment in all the different joint areas that I find unparalleled (and I have been searching, desperately to create that closer to home).

I have tried so hard to break the Steadman Hawkins clinic habit, but, I cannot seem to find doctors that 1- are willing to dialogue with me about the problems 2- are willing to think outside of the box, and 3- are willing to tread into non-standard treatment waters. (This is especially important when I am consistently challenged with perpetual joint issues -- first it was hips and knees, now we have added a problem shoulder and bilateral elbow problems. Christ, for a relatively healthy, strong, athletic person it seems very odd to be having all these joint problems. An additional component to the Vail cocktail (and sometimes the most important one) are the physical therapists that I have worked with. They are some of the most dedicated staff I have ever met. These are the staff of the Howard Head clinic in Vail. They focus on the patient, not on the clock. Sometimes I have had PT last for 5 hours and other times much less. Sometimes you have to wait, but I would rather wait for someone that is proactively trying to solve my physcial problem, rather than have an ontime appointment with someone who goes through a standard routine.

In the one session I had here today, they discovered a couple things about my knee mechanics, that no one ever thought of looking at. With scribbles on my knees, I stepped up and down on a platform while two therapists looked, measured, and tracked how I was mechanically functioning. In that process they were able to make modifications to my physical therapy program that have already made some differences in how I walk. I was once again duly impressed. (This is why I keep coming back).

Local Orthopedic elimination process

I have been on several doctor appointments over the last two months. Today was a follow-up with a standup local surgeon. There are some things that make me feel very comfortable and others that make me puzzle.

Today he determined that I have tennis elbow, or some other overuse disorder of my elbows. I have problems in my right shoulder that may or may not need surgery. I have bilateral knee pain, with predominant right knee swelling due to osteoarthritis, secondary to avascular necrosis (osteonecrois, avn, on, what have you). I have left hip pain due to avascular necrosis.

On the whole he made sense, up to the point when he said, on the one hand, I should not be pulling weeds, or other such work, and on the other hand, that he was not comfortable taking on the paperwork or bureaucratic management of my LTD. When he asked if I was working, I said that my body has become a full time job. And, that I cannot imagine how I could take on anything else. This truly has become a full-time job -- from Head to Toe, Knee to Elbow, Hip to Shoulder and whatever junctures inbetween. Wow. I really am, still, overwhelmed how to manage this process. it is hard to keep a business mind about it. But, I made a plan to follow through with two local orthos and try to create a support matrix here, at home.

Sometimes I think I am too deep and critical it makes we rattle my head. Sometimes I wonder if I am making this complex. I am sure, sometimes I am. On the other hand there are times that I think that is cannot be as complex it seems. I really am trying to focus on creating a local team of doctors to manage my case. I have been steadily working on this since postponing the hip surgery, due to the constellation of medical issues that cropped up. The progress seems so increbily slow. Despite my incredible frustration I am sticking to the plan. I do ultimately need a relief team. I feel like I have been in the trenches too long by myself. I am really tired.

Where is House when you need him?

Have you ever had the feeling that you are just not happy with the care that you receive? Need a more supportive doctor? Or, a doctor that talks to you rather than at you?

Well that is where I am at. I am so tired. I am tired of not having proactive, intelligent medical team to help me navigate the increasingly complex world my body seems to choose to live in. I have lost control. I am along for the ride hoping for the best. And, trying to fight for the best.

On the orthopedic front, I have up to now felt fairly well taken care of by virtue of the team in Vail. With the separation from the team I fell so much more vulnerable. It frustrates me to no end.

Somewhere in my heart I believe that I should be able to surround myself with supportive, intelligent, and reasonably proactive care. Wow, what a concept. The fact that this is not happening is really maddening. As a result I need to actively pursue and ultimate go through a measured and controlled interview process for new doctors in those areas of care that I am particularly concerned about. I know it may sound egotistical, but, currently more times than not I feel like I could run around certain doctors methodological approach. i really want someone or someone's to take things off my shoulder. I feel increasingly burdened and a sense of no where to turn for a helping hand to lift me out of the morass of medical complications. Between the AVN, ON, osteonecrosis, avascular necrosis (whatever you call it) of the hips and knees, and the whole bladder/UTI, etc....I am sick of it.

New promising surgery for osteonecrosis of the knee

I found this article yesterday on a new procedure implemented by Doctor Goodman at Stanford. Promising surgery for osteonecrosis of the knee. This is also in the resource links area.

The fact that this is coming up now is quite ironic given where I am at with surgeons/doctors. more to come

What to do when a doctor has nothing more to say

My knees have been having a new cycle of symptoms that have replicated themselves a few times over the last year. I have had surgery. I have had physical therapy. I have had mental therapy. I swim, do home exercises, and other assorted mobilizing activities. I have had consultations with a knee replacement doctor, who said, essentially, that I was sensitive to pain and needed to go to a pain management clinic. Finally,  I asked my current knee doctor in VAil Co what to do. He had nothing to add. I was quite confronted with the emptiness of no response. Woah! That left me in a personal place of OK, Now what? Ultimately, this forces my hand to find a doctor locally that can manage my case and that has been less than easy and comfortable.

The begining of this story

My name is Alex, and I have been diagnoses with a bone disease called avascular necrosis a.k.a. osteonecrosis nearly 10 years ago. The ironic part of this disease was that it is the result of medications taken for an alternate mis-diagnosis of Multiple Sclerosis, given in me in 1994.

10 years ago I did not realize how extensive the bone disease was.-- in terms os impacting my daily life, defining me in so many ways, a gift in some perverse sort of way, a galvinizer. There are so many adjectives I could throw at the end of the thought.


None the less, it is my life, for whatever it is worth. I can say that in many ways I am a very lucky person. I am surrounded by wonderful caring people. I have not been alone a single day since my surgery in another state,

It just seems like the gift that keeps on giving.