Status 11 weeks post op

So where do we stand as of Jan 18, 2017?
My physical therapist is amazing. We are working hard to get my body working again!
For the last several weeks we've been strengthening muscles and stabilizing my balance and trying to increase my endurance.
I expected the time frame for all of this to be about 8 weeks to no walker and maybe 10-12 before I was really back on my feet at 70% of my pre surgery activity and strength. This was based on my previous surgery in April.
Silly silly me!
As of today I still need a walker, at least nearby if not actually supporting me 100%, and my right leg is just not cooperating. (This surgery was on the right Si joint).
Neurotherapy is the methods they're using on me now because they have realized that because of the length of time my body has been dealing with this high level of pain not only did my muscles change to compensate for it (by changing my gait/walk and putting more/less weight in different and wrong places), but also my brain changed what it tells my body to do thru  my neuromuscular pathways (the path from brain to muscle). So my brain changed what it tells my hips and legs to do because if they did it the old way it would cause horrible pain. So in order to protect itself from pain my brain changed. So all of this completely changed the way my body functioned. Problem is now that my spine and pelvis are back in alignment and have the stability and strength to support my upper body again; my gait and weight distribution are trying to normalize but these neuromuscular pathways and connections are basically saying "ummmm no. And btw fuck you". So, as my ortho put it I have to relearn to walk and retrain my brain to communicate properly with my body. So while I'm strengthening my muscles with pt, I still have no balance and am wobbly and my bottom half of my body doesn't do what my brain tells it to. Since we started these new neurotherapy exercises it's getting better. Soon I'll go into rehab outpatient so I can utilize biofeedback and machines to hopefully finish the job because my muscles and tissue around the joint can't heal while my brain is misfiring and pissed at them. Hence the level of pain I'm still in....
Thank God I have the greatest PT on the planet. Even tho she just went on medical leave!! Lol. But I'm curious about outpatient rehab cuz theyre sending me to a neuromuscular rehab specialist (like for strokes, etc). Then deep tissue eventually. Taking soooo looong!

All the surgeries- why?!

The most recent health adventures, which for those of you who haven't known me very long probably seem like the first of my health problems, have really been just the latest of so many. These are the surgeries. The seemingly endless surgeries, procedures, granny visit, me retreating to my bed for weeks on end, walkers, wheelchairs and canes.

So, why the surgeries? How did we get here?

I have an incurable degenerative autoimmune disease called Ankylosing Spondylitis. No, we don't say that whole mouthful very often so here it is known as AS. Though teaching the kids to say it was very cute and fun....
All of those fancy descriptions simply mean that my immune system has decided to attack me, mainly my spine right now, and basically just eat away and destroy my joints. It has no cure and degenerative means it will only get worse.
However, it is not fatal and we are doing everything we can to slow the progression of disease down and to treat the side effects and damage. That said, in the interest of honesty and transparency, since that's why I'm doing this, some of the side effects and treatments are quite risky, so we have come to a place of choosing quality over quantity.

One of the main and riskiest treatments for autoimmune diseases are immunosuppressants and this is the treatment we have landed on. I go to the chemo center at Kaiser every 6 weeks for about 3-4 hrs to get IV Infusions of immunosuppressants (I sit in a chair with an IV in my arm for about 3 -4 hrs while the medication flows into me slowly and through a filter. Being forced to sit still with nothing else to do is not a bad break from the kids in all honesty lol). This medicine's job, as you can infer, is to destroy my immune system- all of it, the good and the bad. This causes me to be immunocompromised like a cancer or HIV patient, or a baby before immunizations (becoming more clear why I'm so vehement about vaccinations?). And yes, this is as risky as it sounds, but as I said quality over quantity. Risk vs reward. Etc etc.

Shortly after starting this treatment we noticed a positive difference in energy and pain level, however the two pesky joints at the base of my spine, the Sacroiliac joints, where the disease started, were just too damaged already for this essentially preventative medication to have any effect on them. This was still preventing me from standing, walking, sitting for long length of times, and was generally causing intense pain and immobility as it has for 7 yrs now. This was complicated by an additional diagnosis of sacroiliac joint dysfunction, meaning those joints aren't physically functioning the way they were made to. You could say they were "dislocated". That's not medically accurate, but it's still a valid explanation.
The immunosuppressants won't help damage already done, so our only option to fix these unstable and severely inflamed, damaged and dying joints was surgery to get rid of them.



The surgery required to repair these damaged joints involved [WARNING if you're squeamish] drilling through my hip and butt muscles and through the pelvic bone, scraping out all of the tissue in the joint (SI joints connect the pelvis and spine) itself, placing a cadaver bone in the joint along with a bone growth compound and then screwing two large titanium bolts through the pelvic bone into the spine on the other side in order to hold the joint together until the bone graft grows and both sides of the joint fuse together on their own. The idea is to just get rid of the damaged and dying joint all together making one solid piece of bone.

The aftermath of the drill

Not to scale, the bolts are much bigger than they look

If you're especially curious there are several methods for this surgery- we used the zyga method as it's the most thorough, even though the recovery tends to be a bit harder.

Waiting for my cement!

As some of you may recall, between the surgeries I had cement inserted into my spine, called vertebroplasty. To put it simply, my surgeon discovered after the first surgery on my left SI joint that my bones were very brittle and he was nervous about the bolts holding in the  bone without essentially crumbling them. Before he would do the second (right) side he required me to have a procedure where they inserted cement into my base spinal bone (sacrum) to make it stronger for when the second set of bolts (this time on the right side) went in. During this process I received another diagnosis of severe osteopenia, the cause of the brittle bones and a small step away from osteoporosis. At 40 yrs old....

The cement went in through a metal tube through that little hole....

So that's the reasoning behind the surgeries in my case, but as you can see it's just one piece of the huge mess of a puzzle that is my health.

Please post any questions in the comments! I'm an open book at this point;)

Recovery was brutal, I spent a lot of time doing this.....

**It's important to note that AS varies widely in severity and symptoms. Some people experience mild pain and inconvenience, whereas some experience destruction of joints, severe pain, eventual fusion of the spine and heart and eye issues. Unfortunately, I fall on the latter end of the spectrum in the severity. No one knows why some are better/worse than others. Just luck of the draw. It's most likely complicated by the myofascial pain syndrome, osteopenia and Fibromyalgia, but it's not medically absolute. As nothing is.

What is all of this about?

Sadly in the place of the Mitch Nightingale updates I am starting a blog....I know you will all miss his emails, maybe I can get him to post here once in a while;)

On the subject of my health and recovery so many of my amazing friends and family are curious and concerned. In order to keep everyone updated who wants to be, I thought I would start a blog to communicate with everyone together. I'm not a dramatic person when it comes to my health, and this feels sort of dramatic and arrogant, in one way, but I feel communication is key, so I want to respond to everyone who wants to know what is going on and how we are doing. 

I've thought about doing this for a while, but honestly always felt we were always close to the end of the health struggles. 7 years later I'm starting to realize maybe we are not. 

In addition to physical symptoms there are feelings that go along with this disease and illnesses and my medical history. I feel as though I'd be remiss in not mentioning these in case someone else with a chronic illness stumbles upon this or is among my group of friends. It's not that I'm ashamed of these feelings or wish to keep them secret I just greatly prefer focusing on the positive and dealing with the negative aspects on my own. I don't know if this is the right or healthy approach, it is just how I am. 

 So, I apologize if I get sappy, emotional or seemingly whiny. Those of you who know me well know that that is not my intention and is not who I am. I do not feel sorry for myself, I do not have any thoughts of "why me?" and I understand more than anyone that things could be a whole lot worse. I say often that my life is amazing and wonderful and pretty perfect, and it is. I have an amazing husband, beautiful, healthy kids, the most supportive family and friends anyone could hope for and live in a beautiful place in a wonderful cozy house with room enough for plenty of visitors who come frequently. What more could a person ask for?

So this is not anything but an attempt to communicate with family and friends, who are interested, about the status of my health and recovery and how I deal with it on a daily basis. It is also to communicate that anyone suffering from any sort of physical illness also suffers from emotional ups and downs as well. I'm not going to lie and pretend it's not a tough road.

So, let's get started. Why am I here?

There are a laundry list of diagnoses for me: Ankylosing Spondylitis, Fibromyalgia, myofascial pain syndrome, sacroiliac joint dysfunction and osteopenia. I also have a history of endometriosis and am a cancer survivor (thyroid, so they removed it and I take supplemental medication). 

That's the rundown. Basically, all of these things, many of them related, cause pain and crushing fatigue, among other things. I struggle most with the pain and immobility in varying degrees and the at times overwhelming fatigue. 

The only way we get through all of this is one day at a time. My husband, as most of you know, is a saint and couldn't be more supportive. He makes my life easier and constantly reminds me that life is fantastic in spite of anything I'm going through physically. Sometimes that can be tough when your life seems to revolve around symptoms, Drs appts, treatments and medications; when even the simplest of tasks or outings requires an unbelievable level of planning; or a simple sickness my kids bring home from school can lead to specialists and hospitals for me. He brings me back to what's important- him, our friends and family and, most of all, our kids, R and B. They keep me grounded and sane, even in the insanity that is being a stay at home, disabled mom of two.
The hardest part of all of this is thinking about their lives, including my husband's, now and in the future and how all of this effects them. With these illnesses the future, according to the world of medicine, might not be too great for me health wise and I worry about how that will effect my children as they grow into adulthood.
That's why I need to take a step back and take it a day at a time. Seriously. I may post random entries about something that helped my life be easier or less  painful for a brief period of time because, seriously, there's no other way to deal with difficult things in my opinion...Sometimes we may even need to take it just an hour at a time...😜