This is my first entry to my blog called “Autism, Chronic Pain, Autoimmune Disorder, Loss, Love and Optimism.”
Hello this is my first entry to my blog. I am feeling like crappolla today and now wondering if crappolla should have two P’s and L’s? According to the spell check it’s not really a word but you can’t believe everything a spell check tells you. Anyway, it’s that time of the month, no not that, its my, pain comes back, time of the month…. I actually have several. I’m currently taking Humira, Edit (just started my first infusion of Remicade). If you are not familiar with this medication it is an Anti Tumor Necrosis Factor medication (injection). It is for autoimmune diseases. I have Ankylosing Spondylitis. I will from here on out refer to this mainly as AS or refer to myself as a Spondy. I also have Asperger’s Syndrome (a form of Autism) which also has the same initials and is sometimes referred to on my favorite autism site as AS. I also will commonly refer to myself and my 9 year old son as Aspie’s. So I am an Aspie and a Spondy with AS and AS. Back to my Humira. As of now I take it every other week, it gives me mild relief for about five days. I dread the brunt of the pain hitting me like a speeding locomotive that I can not avoid and I see the headlight coming at me as I type. We will see my Rheumatologist, who I will refer to as my Rheumy, tomorrow to see if I can jab myself with my Humira every week or switch to Remicade (now on Remicade my first infusion was Dec 8th) which is an IV infusion that I would do once every 6 weeks or every month (I’m thinking since this is my third Anti TNF and my first two fizzle out too early we should just skip the 6 weeks and go for the monthly). My AS is not my only physical issue but most of my physical handicaps are caused in one way or another by my AS unless you include my sensory processing issues that are related to my other AS (Autism).
When I was around 27 I worked as a CNA (certified nursing assistant). I worked in a convalescent home AKA: old folks home or nursing home. I lifted people and I’m only 5 ft 3in so it was an accident waiting to happen, but I was not aware of that. I enjoyed working as I mainly stayed home until my youngest of my first three reached school age. I enjoyed my job but I started having strange burning sensations in my right hip and leg after a year of work. My doctor tested me for everything under the sun including kidney issues when one morning I woke up and it felt as though I had a knife in my lower back. I could hardly walk but managed to get into the doctor’s office. He sent me for a bone scan and labeled me with this mouthful of a disease that left people saying Anky-losis-whatsit???
For one year I took NSAID (non steroid anti inflammatory drugs) and something to protect my stomach from said NSAID’s. I was better but still very stiff and sore at times, especially in the morning. I was moved to the Alzheimer’s unit at work where all the patients were up and walking around…. not that this was good for my back because they also punched and yanked me around and I still had to do lots of bending, wrestling, twisting and dodging. I noticed that I was dragging my right leg a lot and would sometimes trip over my toe. Now being a klutz was nothing new to me, being an aspie I had been a klutz my entire life. So it did take me awhile to realize, hummm? something is not right.
My doctor was confused and sent me to a stuffy, angry, Neurologist who seemed to take pleasure in poking me with a pin to see if I felt it. After an MRI (scanning of my spine) and a nerve study which is lots of fun *sarcasm*. They put needles into the places you hurt and then zap you with electricity making your damaged nerve jump and scream in pain. He sent a report back to my regular doctor saying I had a bulging disk and L5 S1 (the last disk in my spine) that was infringing on my sciatic and other nerves but thought that most of my issues were all in my head??? What medical school let him pass and who in their right mind made him a “neurologist”? My doctor agreed with me and wanted to send me to someone else but I was done with doctors. I did not refill my NSAID once my RX ran out and just opted for Motrin or some generic form of Ibuprofen.
So, I tripped sometimes, nothing new! When I would have what I now know is a “flare” I would go to a doctor tell them I was once diagnosed with AS and they would poo poo on that and give me some pain meds and physical therapy. Then I would feel better and off Id go about my life again. I got accustomed to being stiff and sore and sometimes in quite a lot of pain that would make me retreat to my bed and my heating pad. I would also sometimes feel as though I was becoming ill, I ran a low-grade fever, and would sleep for a day, then would be fine. Everyone got used to hearing me say “My back hurts” and I believe that I may have kept the people who make Ibuprofen or, as I called them, my little red friends (the generics were little round red pills), in business.
Several years later I left my abusive X husband, took my kids then 12, 8 and 6 and whatever we could stuff into my corolla, moved across the country as far as I could get from HIM to California up in a tiny mountain community above Bakersfield. I worked lots of odd jobs, the mountain market, the truck stop and a home health aide until I decided put myself through school, driving an hour there and an hour back, to Bakersfield, and became a Medical Assistant. We lived on food stamps and child support while I went to school I also took up Kung Fu and Yoga and was learning to control my pain and stress through meditation. I was happy other than worrying about my oldest, my son, who I had worried about since he started walking. He was diagnosed around this time with Early Onset Bi Polar disorder but I know that he had it since he was 2 years old. Difficult does not even begin to describe him but I would do anything to have him with me right now. I will dedicate a blog to him soon, about his life and the horrific pain of loosing him. My son died of a drug overdose after being clean for 2 years from Heroin on August 14, 2011 at 24 years old.
I met my wonderful husband, the man with the sexy French accent, who I could now never live without, on a dating site. He was promised a job back in France (he is a Biologist) and expected to leave so he was looking for the same thing I was, just someone to have some fun with. After my first marriage I decided I never wanted to have a long-term relationship again. Actually my kids were my first priority and I did not want to fall in love, as I could not be all silly lovesick when I had them to take care of and school to finish.
We had a good time together. I would get my wonderful friend, babysitter to take care of my kids and I would travel all the way south, 3 hours, to San Diego to stay with him for a weekend or he would take the bus up to us, when I was not working nights at the hospital as a phlebotomist (person who draws your blood, something I learned in MA school and found that I loved far more than being an MA). We found a Vietnamese restaurant in SD that became our place to go. I actually bought my wedding dress next door to our restaurant. It was nice to be alone with him and we always enjoyed ourselves no matter what we did, we could talk for hours and always enjoyed ourselves even when we had to figure out how to change the spark plugs in my car something neither one of us knew how to do, it was amusing and we were surprisingly successful.
Long story short, his job fell though, I fell madly in love (you can not prevent it no matter how hard you try once its starts you are done for) and forced him to come along with me kicking and screaming. Yes, that’s right, he was scared. Can you blame him? I was a single mother of three kids, one with not only Bi Polar disorder but also an emerging drug problem. Still he knew he was done for as well. Again, nothing you can fight even if it is against your better judgement. Love is truly blind . We moved in with him after dating a year and married soon after and had our first child, my son, very quickly and my daughter, now 6, a few years later before closing up shop. Over a year ago we moved to France. During the time we lived in San Diego I had several more flares. I had one very serious flare and injury the Christmas of 2006. I picked up my Mom from the airport. We went to the grocery store and I bought a couple of cases of soda for my teenagers. I was having that nagging burning sensation and soreness in my lower back but I tried to ignore it. I lifted one case of soda, twisted and placed it into my trunk. I felt a pop, which I later learned was my L5 disk rupturing, and I could not move. I was in horrible pain…. level 10 (um 11 but they don’t let you go that high) on the pain scale. I’m so thankful I had my Mother there to drag me into the car, put my two babies in their car seats, who were only 1 and 3 at the time, and drive us over to my husbands work that was only a few seconds from the hospital. They took me in right away as I was writhing in pain in the wheel chair they managed to stuff me into. They told me I was having muscle spasms and I obviously had nerve damage because of the burning. They sent me home with Valium and Vicodin.
Lovely Christmas, drugged and in pain *sarcasm*. Again I was sent to PT (physical therapy) and I got better but something was just not right this time. I was not bouncing back the way I typically did and my walking seemed to get worse and I even tried another chiropractor that seemed to cause me more pain. I decided my little red friends and my heating pad would have to do.
The next year my husband and I were putting away the groceries (damn groceries!) and I told him my back hurt (nothing out of the ordinary as I have said). I took a handful of my little red friends (ibuprofen) and laid on my heating pad but no go. The next day, that was Sunday of course, I was sick to my stomach with the pain and the burning in my back, legs and right hip. I called my doctor at home (you know you are in pain if you are brave enough to call your doctor at his house) and he called in pain meds (you know your doctor knows you are in pain if he calls in pain meds on a Sunday from his house). Again I tried PT and expected to get better but I seemed to get worse so my doctor discontinued it.
My walking was getting worse, the pain was getting more and more intense and I was not able to stop taking the pain meds, I actually needed more, which made me feel weak (I hate this feeling). Again I was put on NSAID, I was given an MRI and told my disk was ruptured and torn and I had other issues in my upper back. I was given steroid injections into my back that did nothing for me whatsoever. I began to get scared especially when my PT told me that my SI (sacroiliac joints) were locked, that maybe I did have AS. You see I was happy to give up this diagnosis, as I did look it up in the Encyclopedia when I was first told I had it. We did not have the www at the time I was first diagnosed. I saw horrible pictures of people who were bent clear over as their entire spine had fused into a C position. I read about people who had to look through their legs and walk backward to be able to see where they were going…I DID NOT want this disease!
I kept asking my doctor (general practitioner who was trying very hard to help me) what we could do next (I fully expected to get better and refused to accept the “I don’t know” excuse) but he was at his wit’s end and could not figure out why I was such a wreck. Not only did I have the ruptured L5 disk but also my L4 was bulging and I also had stenosis, bone spurs, and loss of disk space in my thoracic spine and a strange enlarged vertebra. He seemed to be saying the same thing all the time telling me that it was just due to injuries and aging. At 40, I did not think I was that old nor did I have any bad injuries even though I always had physically demanding jobs. I walked like a drunken penguin and was in so much pain that I could not get off my Oxy’s and he would lecture me about taking pain meds every single time I saw him. One day I was so sick of it I said, “why don’t you just take me off of them then, you just keep giving me more” and he got all nice all the sudden and said “No, no we don’t want you to go off your pain meds, your pain level is too high and you need them”. Then why do you keep lecturing and making me feels guilty? He explained that it was expected of him but that was the last “lecture” I got.
My doctor started sending me around to other doctors, the ortho docs that just did the steroid injections that did not work then dropped me. I personally think my GP, like other doctors, wanted to get rid of me, he just did not know how to help me. He wanted to send me to a doctor who manipulated your joints (basically a chiropractor but he had an MD). He told me that it was only other option next to acupuncture and massage. I refused to believe that no one could help me and that I would have to take drugs my whole life. My insurance would not take this doctor so I would have to pay out-of-pocket which we could not afford with two autistic children and two teenagers daughters and my adult son who was always “needing” something. Actually this was a good thing because with the fusion that the doctors were not aware of this manipulation could have left me with fractures or even more nerve damage. Even though unbeknownst to me it would have been a bad move I was still angry and frustrated. I was also angry that basically the doctor was saying that he could not do anything for me.
I was at this point so tired of this and I wanted it fixed, because of my autism I see things in black and white, if something is broken, you fix it. I found a doctor who was doing a disk replacement study and since they told me that this was my worst problem I went to see this doctor armed with my latest MRI. He wanted me right away and told me that I was a perfect candidate so I was very happy. I had suffered for with this horrible chronic debilitating pain for over a year and pain in general since my twenties, this great neurosurgeon was finally going to make me feel better. He told me stories of people who came to the hospital with a walker, like an old lady, and left walking on their own accord only a day after surgery. I was ready for this, we were excited, my Mother was worried but she’s my Mom and she worries but now I wish I would have worried to.
I waited patiently for my surgery day….so excited when it finally came. I was told two days in the hospital tops. We made a “social story” (a story with pictures and words for your autistic child so they understand what is going on) for my daughter and I was off to get better. When I woke up from the surgery my surgical nurse said before I was even fully awake she knew I was in serious pain. I felt like someone was ripping me in two. I was pulling on the bed rails so hard they were bending in, grabbing at the sheets, and begging them to make the pain stop. My recovery nurse was upset and confused because he said he could not give me any more pain meds. Now, I will tell you that I am no baby, I can handle very intense pain, I had my kids naturally, but this pain was way worse than any pain I have ever felt. I was in so much pain I could hardly talk but when the nurse asked me my pain level I managed to yell “TEN” at him. Finally a smart nurse came over and looked in my chart and told my nurse that I had been on pain meds for over a year so and I was pain med tolerant. He tried to argue saying that none of Dr Perfect’s patients had this much pain but thankfully she was a good nurse and she knew I was dying. She took over and finally I was given some mild relief, at least I could talk coherently again.
After they moved me upstairs I did make myself get up and go to the bathroom, I refused to use a bedpan and I did not want anyone to think I was a baby. I did freak out when I peed blood but the nurse told me that was normal so I went back to bed feeling still as though I was being torn in half. I started begging for a heating pad…. all day, all night. Finally some nice CNA brought me some towels that she warmed in the microwave…. bless you whoever you are and wherever you are, you have no idea how good that felt. Finally I was moved to the Neuro unit where I was supposed to be and they got me a real heating pad with hot water in it but I was still in so much pain I could not sleep and was vomiting which was even more painful as my incision was in my stomach and it caused my muscles in my back cramp up. They kept telling me they could not give me any more meds and Dr Wonderful never ONCE came to see me.
That second night I woke myself up screaming and crying…. they came in and checked me, I thought I was dying. My heart rate was dangerously high and my body temperature was 103 F. The nurses were flipping out and running around, I vaguely remember one saying she was calling the doctor. I insisted on going to the bathroom in the middle of all this so my CNA, bless his little heart, as my neighbor was having nearly the same problem as I was, helped me to the toilet. I knew that I needed to pee but I was shaking all over and I started dry heaving. I think I went pee but I don’t remember. I remember them bringing in an IV and hooking me up with Dilaudid which to me sounded like Bin Laden so, much to the nurses amusement, this is what I called it. I had a little green button and when it lit up I could push it and dose myself with the nasty stuff. I loved it for two days, it kept the horrific pain at bay but then I told the doctor (not my doctor just the poor hospital doctor who was kind enough to take care of me) that I did not want to be on that stuff anymore that I could not sleep more than ten or fifteen minutes at a time and was seeing things. He laughed and said that he liked motivated patients. So I was off the Bin Laden and back on oral Oxy’s. I started eating Ice cream and frozen fruit bars until I could eat real food. I was still in a lot of pain but I made myself get up and walk with my walker and they finally let me go after 5 days in the hospital. I thought once I was home I would feel better.
So I came into the hospital walking on my own accord but left using a walker…. I think my Neurosurgeon had it backwards. When I went to see him he insisted that I not use the walker…. guess it made him look bad. He also tried for the year that I saw him to get me to mark that I had no more pain on the little surveys for the study. I refused to do this as I was still in pain…. and it was worse than before the surgery.
I took it upon myself to go back to the sports medicine doc (I will now call him my SM doc) who did my steroid injections as he was in our network and Id seen him before. I told him that I was diagnosed with AS and about the PT saying my SI joints appeared to be locked. I also told him about the surgery and how horrible it was and that I was now in worse pain than before. He was concerned which was something new. Most doctors would wave their hand at me and tell me that only men get AS and my spine would be completely fused and other such nonsense and that I needed to work harder at healing from my surgery. He pulled up my latest (my third actually) MRI but he said that he could not see my SI joints and in order to have AS I would have to have some changes or fusion to those joints.
I was sent for a CT scan of my pelvis and X rays. When I went back to see my SM doc he was very “freaked out” he wanted me on the table right away and was flying around the room like I was dying of cancer which was my first thought. I asked him if he found anything and he told me that he found several things. He showed me the CT and told me that my SI joints were indeed fused. My right appeared to be completely fused and my left about three-quarters fused. He also told me that he thought I might have some bursitis (inflammation of the little sacks around your joints). I do have bursitis just to add some extra pain to my AS. Also he said the disk replacement looked “big”.
I was sent that day to a Rheumy who was of the “you are not a man and you do not have a complete fused spine so you do not have AS” school. So I moved to France, with my huge bottle of Oxy’s and my heating pads, cushions and tiger balm. Moving was pure hell and I got very sick on the train from Paris to Lyon and passed out giving myself a huge bruise that spanned my entire thigh. My husband had to drag me out of the train and a very nice man got me a wheel chair, as I simply could not stand up anymore.
The first doctor I saw here in France was just a general doctor and he put me on a slow release Oxy….Oxycontin LP. This worked so much better. I was not popping pills all the time and getting sick to my stomach. I only had to take two a day. Another long story short, my new Rheumy diagnosed me with, AS even though I am HLA-B27 negative. I now see him and I have recently been seeing an Ortho surgeon (bone surgeon). He tells me, while looking at me with pity (and I don’t read facial expressions well but I read this) and tells me that the disk replacement is too large for my back and is forcing my back to bow inward (if you look at my back on an x-ray it sort of looks like I’m playing limbo and doing a good job of it). My disk is in danger of migrating (moving out-of-place) and is already slipping back and forth. Also my disk above is completely destroyed now. I have permanent nerve damage dating back to my late 20s and I am now 44 so there is no way to fix it. I will probably never walk without a cane….and I do own a wheel chair. However, he can possibly put some rods in my back to straighten back out my spine to ease the pain and to save the disk. He also has to fuse the L4 to my L5.
I go to the hospital for two weeks in March or maybe, if I’m lucky, before then. I am to be assessed for how much metal I need in my back. I wonder if I will make the airport alarms go off after my surgery? I am hoping to at least be able to sit and or stand longer than ten minutes and to be able to participate in life far more than I do. Just as I always have I refuse to give up, I know there is some way to make my life better. It seems like I keep getting worse but I have doctors who want to try to help me so that makes me far more optimistic than I was before.