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I was sitting in my apartment when I got a call from my brother. I expected he wanted to talk about my appointment that day with a Rheumatologist. Instead, he let me know that my father had returned from work to find our mother dead on the floor of their bedroom. We have since determined that her heart gave out and she just fell back on the ground and died. This was the most sudden, unexpected experience I have ever been through.
Her health was very poor due to a debilitating autoimmune disorder called ankylosing spondylitis. She was never officially diagnosed, but she had all the classic symptoms. My brother was diagnosed with it a month ago, and my appointment on Monday was the first in the diagnostic process for me. I am fairly certain I have the same disorder, and am experiencing many of the same symptoms my mother did at my age.
I was extremely close with my mother, as she and I spent countless hours together when I was in homeschool. We were two of a kind and I will miss her dearly.
[ May 03, 2014, 03:15 PM: Message edited by: Boris ]
Posts: 3003 | Registered: Oct 2004
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My mom died on January first of this year, and yet I have absolutely no useful advice. It just sucks. And even once it stops sucking generally, it still sucks whenever anything happens that reminds you of her. Even really inane, silly things.
I'm really sorry for your loss.
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Thanks everyone. If you all don't mind, I'll be posting the Eulogy I wrote for her funeral once that is done with on Saturday. We have the viewing tonight and the family viewing in a couple hours. I am totally not looking forward to this. All I want to do right now is run and hide. Just go bury myself in a nest of blankets and not come out for...ever.
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quote:Originally posted by Boris: Thanks everyone. If you all don't mind, I'll be posting the Eulogy I wrote for her funeral once that is done with on Saturday.
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We had our private family viewing today. If any of you live in the Weaverville/Asheville, NC area...I recommend West Family Funeral Services. They are very kind and the mortician did a good job with my mom's body. Despite the fact that my mom's mouth was naturally downturned (like mine) so the muscular tension that happens after death kinda made her look a bit like a frog.
However, the mortician did a skillful job within the limitations he was handed. They used just enough makeup to make her look like her (doing her frog impression). She didn't look like a wax figure or mannequin. Still...it wasn't her.
I freaked out and broke down more than the rest of my family, which I kind of expected, but after holding her hand I felt a little better. As I was walking out I turned around and found the perfect viewing angle to see her almost smiling and happy the way she was.
If I bring anyone down with all this, I apologize. I am never very good at speaking about my pain or difficulties, but I do okay writing them out, so the Internet is a good place for this. While I don't really involve myself here often, it was once a place of comfort and conversation for me, so...Here it is. While I don't expect anyone to take time out of their lives to view this stuff, my mother's Obituary and a memory wall are available here.Posts: 3003 | Registered: Oct 2004
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Boris, please don't worry about bringing anyone down. Your mother sounds like a wonderful person. I am glad you chose to share what you're going through as well as some insight into who she was.
Posts: 4287 | Registered: Mar 2005
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This is my mom's art website. It hasn't been updated in a year. She had major reconstructive back surgery in June last year, about 3 days before I had reconstructive surgery on my ankle. He surgery was much worse. After the pain in her back from surgery mostly subsided (and the post-surgery anti-inflamatories wore off) she was in incredible pain still because of what AS does.
Most people don't know what it is, so I'll explain. Ankylosing Spondylitis is an Auto-immune disease similar to Rheumatoid Arthritis, except that AS attacks the Sacro-illiac joints and spine primarily; peripheral joints like the Jaw, Elbows, and Ankles (achilles tendonitis is common); and the impact of having proteins caused by inflammation constantly coursing through the blood can cause a lot of problems. Irritable Bowel is common, Inflammation of the Iris is also common.
My mother dealt with *all* of those issues. She had multiple ankle surgeries, Irisitis, had to have her left hand repaired because she could no longer hold a paint pallet, then her final surgery in June was to perform multiple vertebral laminectomies and spinal fusion from the L3 vertebra to the T5 (or so) vertebra (This is an almost complete spinal fusion). She was scheduled to visit a rheumatologist next month, but her AS was so advanced very little could be done to help her.
Typical treatment for AS is prescription (surgery strength) anti-inflammatory drugs taken daily. There is no cure. Mild to moderate cases are treated with Disease-modifying antirheumatic drugs (DMARDs), which is a class of drug originally developed for use in treating cancer. The first clinical trial for us in Rheumatisms were performed in 1980. High doses are administered in Chemo-therapy treatments. Anti-rheumatic doses are not high enough to cause the severe nausea, hair loss, and other side effects of chemo-therapy.
Corticosteroid use is also helpful, but this is typically limited to periods of symptom flare up, since this class of medication has serious implications with long term use. Steroid injections are helpful, but only useful when symptoms are localized to one part of the body.
Severe cases of AS are treated with a relatively new class of drugs called biologics. These drugs limit the body's production of TNF protein, which is a protein that causes inflammation, but is essential in fighting off infections, so Biologic use carries its own serious dangers (individuals who receive these medications must be screened for latent Tuberculosis, as Biologic use will cause them to develop an active tuberculosis infection).
My mother could have benefited from biologics, but they would likely have caused her to die from uncontrolled infection rather than heart failure, which would have been a much more painful way to go.
Now that we know about this disorder in our family, we can all be tested and treated and not have to suffer like my mom did. Looking back at my medical history, I initially developed symptoms in the late 90s, when I had several bouts of unexplained lower back pain. This has slowly progressed, with constant onsets of lower back pain, coupled with the more recent (2004) onset of shoulder and neck pain. About two months ago my jaw and elbows began hurting, and a year and a half ago, the paroneal tendons in my left foot inexplicably ruptured, requiring surgery to repair. I just started taking prescription anti-inflammatory medications, and after 3 days of taking them, my level of pain has diminished significantly. I was in enough pain that even Tylenol 3 left me with significant discomfort, and I was also taking nearly 3000mg of Ibuprofen a day. My mother took similar dosage levels of Ibuprofen when she was younger to control her pain, but this ultimately caused bleeding ulcers and she could no longer take NSAIDS.
AS results in increased levels of C-Reactive protein in the blood. Everyone has some of this protein in their blood, but an average level is usually less than 1-2mg/liter. C-Reactive Protein has been shown to have a causal relationship with heart failure in levels above 3.9mg/liter. The blood test I took to determine the presence of the HLA B27 antigen also showed a level of 8.9mg/liter C-reactive Protein. Following my mother's surgery, she likely had levels significantly higher, which would have weakened her heart. An exam a couple months ago revealed a calcium deposit surrounding her ascending aorta. We think this combination is what finally caused her to die, but this is a quick, painless way to go. She would have blacked out immediately and never regained consciousness.
There. I have done far too much research on this disorder, since it will be a major part of my life. I figured it would be good to explain it, since it is a terrible thing to live with, and I am less than half my mother's age. I can only imagine the amount of pain she was in after suffering from this disorder for 40 years or more.
Because it isn't a well known disorder (typical chances of developing the disorder, even with the presence of HLA B27 antigen is 1 in 5, and the antigen only exists in about 1.3% of western european populations), she was never diagnosed by the multitude of doctors who treated her that *should* have recognized the symptoms. Western North Carolina is a beautiful place to live, but the doctors are mostly not competent in their fields. So I have a significant amount of anger about this fact right now, though it is a waste of time to have that kind of anger. Anyway...I'm about to head to the viewing, so 3 or so hours of standing around shaking hands, hugging people, and crying my eyes out are ahead.
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The viewing was much less difficult than I thought it would be. Lots of old friends came through and that made it much easier. I started the evening sitting in a chair doing my best impersonation of a thousand yard stare. It took 15 minutes after the first person came through the line for me to realize that the proper response to "We are so sorry for your loss" was "Thank you, we really appreciate you coming here." Rather than "Mmm..." *stare*. As things went on I started cracking jokes about my dad with his coworkers, and that helped greatly. By the end of the night I was actually enjoying things and forgetting the loss. Then we closed the casket and I broke down again. Big time. That part was extremely difficult for me. But things are getting easier. The breakdowns are fewer and further between, but I imagine they will happen for a while now.
Prior to this week I could probably count the number of minutes I've spent crying over the past 12 years on my fingers...I'm certain I've spent at least several hours this week just crying, and several more holding tears back. It always used to hurt a lot to cry. In school, kids made fun of me until I cried, then made fun of me *when* I cried (That was the game, you see). So I developed some pretty strong defenses against the tear train. So when I found out about this, I had just taken the first dose of anti-inflammatory meds, and after an hour I couldn't distinguish between pain that was there before and the pain from crying. It doesn't hurt as much to cry now.
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One of the more annoying parts of being in my family, it seems, is that when difficult times occur, things tend to pile on pretty heavy. We've learned to adapt to this by making fun of it and each other. We all have thick skins and poking fun at one another is our way of showing love. We trust one another enough that we know very few things we say in jest will hurt one another. One of my favorite mother/son activities was ganging up on my dad to rib him for things he does (Though my father is a very strong, intelligent man with an infectious personality and some really impressive leadership ability, he does tend to act a bit like Tim Allen on Home Improvement sometimes).
At any rate, as far as difficulties go, we tend to get thrown a lot at once. Right now just about everyone in the family is sick or not feeling well. My youngest sister is having hip problems and doesn't feel fully well. My oldest sister is having abdominal pains. By brother's knee has swollen up to the size of a cantaloupe. My father has the same cold that caused my mother to sound like the Crypt Keeper on the phone the day before she died. And I apparently have the Bolivian Gut Rot (I have decided that Bolivia will be my country of choice for completely invented ailments). This is also coupled with me and my brother suffering some pretty substantial pain from our AS. And though the anti-inflammatory meds are helping, standing around shaking hands for two hours did *not* help ease things for me.
Aside from all that, this week has been pretty terrible, as you might expect. But with physical ailments added on, the loss of appetite that accompanies heartbreak of this scale is another difficulty (I think I've lost 10 pounds since Monday). And one my way getting here, I ended up driving around the Phoenix Airport for 45 minutes before my flight because the airport authorities seem to have this superstition about putting up visible signs that tell you which airline flies out of which terminal. That, coupled with 30 minutes of looking for a parking spot in the *wrong* terminal, and I got to the check in counter 15 minutes past the time I could check in. Rescheduled flight for 5 hours later. Rescheduled flight sits on tarmac for an hour. The connecting regional flight to Asheville, NC was delayed *five times* before finally taking off 4 hours after scheduled departure. 16 hours to get home, trying almost the whole time to keep myself from crying my head off.
Just gotta say, there's a point when things get so annoyingly rough that you stop being angry and frustrated and start sitting there with an expression on your face that is half Oscar the Grouch and half Sweetums (google if you need to). I still say my mom is taking the opportunity to play tricks on us right now. Cause she would do that.
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I am mentally, physically, and emotionally exhausted. I don't know how I'm going to go on from here, but I will go on. She told me many times how proud she was of me before she died. I hope I can continue to make her proud.
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boris, that all sounds terrible and i hope you are doing well. I can see a lot in you that your mom was absolutely proud of. and i hope and have little doubt that you will find the will to carry on.
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I'm very sorry to hear that, Boris.
