January update

Well, The physical therapy I talked about in August went really well. It helped my knees, ankles, & feet, & I was doing better joint-wise. Good enough to go to Europe for our anniversary. Then, starting in December I developed lower back pain, something I’ve never had.

It was worse when I slept in the bed at home, so I’ve slept on the couch full time since. For some reason, that eased it a bit. It gradually worsened, & I’ve been mostly couch-bound 24/7 for the past few weeks. I went to my local spine doctor (not the one in Bethesda who did my last surgery), & he had me get an xray, MRI, & EMG. The good news from the EMG is I have nerve root irritation, but no nerve damage. The bad news is I have 2 bulging discs in my lower back.

A bulging disc is far better than a herniated disc. It’s swollen & kind of pops out on one side between the bones in the spine like a bump on a balloon. A herniated disc is just busted. So the first line of defense is a few weeks of in-home physical therapy again, going back on muscle relaxers, & using a topical cream from a compund pharmacy that has a slew of meds in it.

The doctor says, which I already knew, that lower back disc problems are super common, & it doesn’t mean this is from my Ehlers Danlos. Christian’s opinion is it doesn’t matter what caused it, because that doesn’t change the fact or treatment. While I understand that, to me it does matter.

I’ve known all along that my lower spine was subject to attack. EDS progresses. It attacks whatever connective tissue it can. I know it’s not possible to know for sure this is EDS, but it’s also, theoretically, not possible to KNOW that EDS caused my neck to collapse. It was just a logical assumption since that event was so rare. So even though what I’m facing now is common, EDS is not. And therefore I’m convinced that my old evil nemesis is at it again.

We’ll see what happens with the meds & physical therapy. I’ll post an update when PT is complete, & in the meantime, cross my fingers that the bulging doesn’t turn into herniation.

30 Things About My Invisible Illness You May Not Know

Sept 10-16 is National Invisible Chronic Illness Week. This is a meme for people living with invisible illnesses to answer 30 things. So here’s mine!

1. The illness I live with is: both ACM (Arnold Chiari Malformation) type 1 and EDS (Ehlers Danlos Syndrome) hypermobility type.
2. I was diagnosed with it in the year: 2005
3. But I had symptoms since: 2003
4. The biggest adjustment I’ve had to make is: not being able to turn my head after a complete craniovervical fusion (i.e., my head is fused to my neck and all the way down), and the pain that ensues whenever I try (involuntary, through muscle memory – the “what’s that over there?” reaction).
5. Most people assume: I have bad headaches, when in fact, the bad headaches went away after my brain surgery.
6. The hardest part about mornings are: cracking all my joints & putting some back in place.
7. My favorite medical TV show is: I’m a die hard E/R fan. I’ve seen the series in its entirety about four times.
8. A gadget I couldn’t live without is: my iPad.
9. The hardest part about nights are: finding a comfortable position.
10. Each day I take __ pills & vitamins. 15
11. Regarding alternative treatments I: am open-minded, but not many have worked for me. Acupuncture provides relief, but it only lasts a couple of hours.
12. If I had to choose between an invisible illness or visible I would choose: What I have now. It’s just what I know. I’m sort of visible, since I’m bald and have a 13″ scar down the back of my head and neck. And I either use a wheelchair or walk like an old man.
13. Regarding working and career: I went on disability in June 2005 & returned in January 2007. Unfortunately, going back contributed to the decline that is part of EDS, and it was detrimental to my health. I went back on disability in Sep ’10 & it’s permanent this time. I aged and went downhill physically about 10-15 years in those 3 years I returned to work.
14. People would be surprised to know: I actually don’t mind leading a sedentary lifestyle.
15. The hardest thing to accept about my new reality has been: no longer being able to drive.
16. Something I never thought I could do with my illness that I did was: find a physical therapist who wouldn’t harm me (PT has to be approached differently with EDS patients… books have been written about it).
17. The commercials about my illness: don’t exist.
18. Something I really miss doing since I was diagnosed is: riding my scooter. GOD how I loved that.
19. It was really hard to have to give up: most of my co-workers, who stopped coming around after awhile. I put more emotional stock into those relationships than I should have.
20. A new hobby I have taken up since my diagnosis is: selling stuff on eBay and Amazon.
21. If I could have one day of feeling normal again I would: take a day-long ride on a scooter.
22. My illness has taught me: to never take things for granted, especially a young, healthy body.
23. Want to know a secret? One thing people say that gets under my skin is: “You look good” or “you look better”. It’s an act, a face I put on, when I feel like shit but go out anyways. How I look isn’t reflective of how I feel.
24. But I love it when people: ask if they can do specific things. Rather than, “let me know if you need anything”, offer something, like, “can I take you to a doctor’s appointment sometime?”
25. My favorite motto, scripture, quote that gets me through tough times is: “Yes, these events are true, yet sometimes they seemed to have happened to someone else, and often I feel like a curious onlooker or someone trying to remember a dream. […] I view this time with surprising warmth. One can have, it turns out, an affection for the war years.” – Steve Martin
26. When someone is diagnosed I’d like to tell them: It’s going to be a living hell, but you will learn how to get through it.
27. Something that has surprised me about living with an illness is: When you’re in a wheelchair, most people look at and talk to the person pushing you. It’s so offensive!
28. The nicest thing someone did for me when I wasn’t feeling well was: When I used to have headaches that were unbearable, had me in tears, and nothing could touch them, Christian would lay with me and stroke my head, or hold my face in his hands. It was the only comfort I had.
29. I’m involved with Invisible Illness Week because: People don’t think you’re supposed to ask disabled or ill people about their condition. The opposite is true! We want to talk about it… we need to talk about it.
30. The fact that you read this list makes me feel: Surprised, since most people ignore my Facebook notes!

August Changes

This month has brought quite a few changes.

First of all, almost three weeks ago I ended up in the hospital at Dekalb Medicl Center with a DVT (deep vein thrombosis, AKA a blood clot) in my left lower leg. I woke up with a sore ankle on a Wednesday, and by the middle of the night Friday morning, the knot was huge, discolored, and sore. I could barely touch the skin, even without pressure, and feel pain. I recognized it, with trepidation, as the blood clot I had last April. Shit. So yep, off to the ER we went.

They started me on blood thinning medication and when I promised to see my GP first thing Monday morning, they didn’t admit me. I’m now on Coumadin and, since this is my second clot and I lead a sedentary life, I’ll probably be on it permanently. For now I’m having blood drawn at the hospital a couple of times a week and my GP is regulating it, but next week i start at a Coumadin clinic. If you’ve had a clot before this is familiar speak. If not, well, it’s weird. You have to be on this Coumadin med for usually 6 months for an arm clot & a year for a leg clot. You go to the clinic twice a week, they prick your finger, & check what’s called an INR. It’s delicate to get you in the range & stay in the range, & they try to keep you stable through constantly altering your dose & telling you to keep your diet steady. So anyway, I spent a couple of weeks with my leg elevated & watched even more tv and movies than usual.

One really gross thing. The medicine Christian had to inject into my stomach 2x/day for 10 days when I left the hospital… it created these awful things called nodules which are bruised bumps all over my stomach where it feels like the vessels are ballooned. NASTY. And they hurt like hell.

As mentioned in my last post, on August 22 I had an appointment with a knee guy. Big misunderstanding! Turns out he’s an ortho surgeon thinking I was there for a knee replacement surgery consult. NO. Joint replacement surgeries don’t do jack for Ehlers Danlos patients. The problem lies in our connective tissue, not the bones. That was a disappointing visit, but will look good on my disability papers that surgery won’t do any good!

Really there’s no magic wand for my joints. It’s the nature of my condition that I’m degenerating. But what I can do is try to fight through the pain and move. So, I’m now back in physical therapy. But this time my therapist has read the book about how to treat EDS. And the best part is he comes to my house. So three times a week I see him. We’re only on week two but I can already feel strengthening. Now it’s not what anyone else would define as strong. But to me, being able to sit up on the couch and life my leg 20 times in a row is a big achievement. This guy is used to working with shut-ins, the elderly, and people like me. So he doesn’t push me whatsoever. He says it’s okay to use my walker if I’m sore, or take the chair if I go anywhere that would require walking any distance. I’m hoping to work up to the point where I can leave the wheelchair in the car more often. We’ll see.

I still haven’t had my crazy meds regulated, but I have acquired a new psychiatrist. I go for a second visit next week, at which point he’s going to hopefully switch up my meds. I’m still with the same psychologist, who’s just a DEAR. (Barbara Thomason, if anyone in Atlanta is ISO a therapist.) I like this new shrink. Every shrink I’ve ever seen has had a terrible bedside manner, and have been the stereotype. Old, white, little glasses they peer over, white hair, monotone voices, and not a drip of empathy or sympathy. This guy is actually personable. I’m looking forward to getting back into a normal state of mind. Stay tuned to see if it shall be so.

The Effect of Heat

So, it’s the summer update. Summer sucks! I don’t know if it’s a side effect of one of my many meds, but I have awful intolerance for heat. As in, I step outside & break into a sweat. This isn’t cool when I try to keep my body in a comfortable state as much as possible!

My neck is still doing great, a year & 3 months since surgery. That makes me very happy, because when your neck is messed up, everything is shot to hell.

My eyes… I haven’t done anything. I was told I needed that surgery, chickened out, & haven’t rescheduled. I just deal with the lesions that I get (only about one a week recently), & being blind as a bat. Eventually I’ll do something, but right now I’m just not there.

The biggest news is I have an appointment with an ortho who specializes in knees on August 22. This is huge because it’s the first time in about 20 years that I’ve had my knees checked out. They’re the biggest contributor to my pain recently, so this is a really good thing. I have no idea about his knowledge of Ehlers Danlos. But, my GP has sent folks to him for years, & says he’s the kind of doctor who’ll read & educate himself if he encounters something with a patient that he’s not experienced with. Also, with my knees, we think we’ve finally found a company who can come to the house & do PT. We gave them the title of the book PTs have to read before working on me (because PT on EDS patients is different from regular PT… enough so that they had to write a book on it). Our hopes are up on this one, too.

My other joints are problematic as always, but endurable. I have no shyness in saying I can tolerate some pain.

I’d say I’m cancelling socializing less than usual. I was making plans to have lunch with friends & the like, & more often than not, I had to cancel because I didn’t feel well. I even went to a July 4th party & found comfy chairs, & stayed for 5 hours! I haven’t stayed at a party for 5 hours in years.

My dear Melanie now has, in addition to a new baby, a salt water swimming pool, so I try to get over there as often as I can. It’s like taking a huge epsom salt bath & makes my joints feel great. Plus the baby is good mental health medicine.

Speaking of mental health, I recently decided on a whim I wanted to get off seroquel, which I’ve been on for 8 years for insomnia. I titrated off it, switched to ambien for 4 days, & didn’t sleep. I started going insane from sleep deprivation, said screw this, & went back to seroqel. I have some work to do there. I’m gonna see a new shrink soon, because my crazy meds are definitely not the right ones I should be on.

I haven’t upped my oxycontin dosage in a long time, & I’m not taking percocet that often for breakthrough pain. Another good thing. I think I’m doing a really good job at taking it easy & not pushing myself, & that goes a really long way.

Last but not least, the brain. All’s still well! I’m 6.5 years post-op from my brain surgery & have had no Chiari symptoms since surgery. I’m one of the lucky ones, because this is NOT common. It’s actually against the odds. So I wear my big bulky neck brace anytime I get in a car with someone, because trauma to the neck (i.e., a car wreck) has the greatest chance of messing up my brain.

Things are pretty good. Now I’m gonna go to my handicapped accessible shower (thanks to Christian’s handywork), & cool the hell off. Ciao.

2012 Update

You’re not supposed to blog about the fact that you haven’t blogged recently, so I’ll not get into that. So, how’s my health?

– The neck. I’m a year post-op from my last surgery, & glad to say the surgery was a success. The problems I experienced from the herniated disc at C6 were resolved. That went from my primary source of pain to not an issue. I’m afraid, however, that C7 might be herniated, based upon some beginning signs that I recognize from before. Last time I herniated one year after surgery, so it doesn’t surprise me if this is going on.

Why do my discs keep herniating? Well, mainly, Ehlers Danlos Syndrome is to blame since it’s a connective tissue disorder. The secondary problem is a LOT of strain on a neck that’s already weak. Imagine the cumbersome weight of the metal I have. Now imagine a pivot. That unmovable mass pivots around on the intact vertabrae it rests upon. In other words, the more metal, the more stress upon what hasn’t been fused below. Does this mean a never-ending cycle of herniations continuing down my back? Possibly. Since what I have affects 1/10k people, there’s just no long-term research on what happens  after craniocervical fusions. Seriously, no one knows.

2) The eyes. The last time I saw the corneal specialist, we’d exhausted all options. I made the rounds checking out the retinas, etc., to ensure Map Dot Fingerprint Corneal Dystrophy is actually the sole source of my vision loss. He’s deemed that to be “yes”. The next course is surgery, where they’d actually scrape off part of my corneas. I’ve been too scared to do it because I have to be awake (**shudder**), & have just gone along as usual. This has to stop at some point. I just need to work it out.

3) The other joints. Adding celebrex (which is an anti-inflammatory) to my pain meds has really helped there. I haven’t made any movement on getting in-house PT started, out of laziness. I need to get on this, because we’re planning a trip to Europe in November & my knees & ankles have to improve some first. I’ve been going out without my wheelchair & that’s gone well.

The biggest thing I’m battling now is insomnia. Because I sleep poorly, I’m tired all day & super easily fatigued. Going without sleep is literally maddening. I hope to go to a sleep clinic soon, because I’ve become desperate. All this is happening while being on 150 mg of seroquel. If you’re not familiar with how seroqel is used for sleep, don’t think sleeping pills like ambien. Think horse tranquilizer. The standard dose is 25 mg for sleep, & I’m on 150.

Speaking of fatigue…

 

trucking along

Nothing major to relay, but here are a few assorted updates since my last post:

* The opthamologist Terri’s mom referred us to really knew his stuff, and we’re sticking with him to treat my eyes. I see him this upcoming Wed to undergo tests- said tests will tell us what the next steps will be to treat the map dot fingerprint corneal dystrophy.

* My joints, while still no walk in the park (pun intended), have felt a lot better since I switched from anti-inflammatories to Celebrex.

* My surgeon looked at neck x-rays we mailed up to him, & my fusion’s not healing at the rate he wants to see. I’m getting some more done soon for him. I try not to worry, since it can take up to a year & a half for bones & metal to completely fuse together.

* I use a chair when I go out, but a walker at home. The walker rocks. It has a seat in case I get tired, & a pouch to carry stuff around.

* My mind & attention are mostly on my eyes currently, but getting into physical therapy for my joints won’t be too far away. We have a lot to do for that. Especially since we want in-house visits, plus the therapist we select has to read a manual about how to work on EDS patients.

For awhile now, I’ve avoided making plans to socialize for dinner, drinks, etc. I can’t predict on any given day if I’ll feel like getting out. It’s pretty rough on me physically when I go out, I sleep for a couple of days afterwards.

A few folks have sent messages checking in, and thank you so much for doing so. You inspired me to post this, when I wasn’t really feeling it. Honestly, my biggest battle right now is loneliness. I have two folks who visit about once a week, & I see my dad every couple of months. That amount of social interaction gives me pity parties sometimes, & I hate doing that for soooo many reasons. I can’t expect anyone to read my mind, & I also believe it’s my responsibility to ask for company if I need it. But it’s awkward & in a weird way, feels like throwing a surprise party for myself.

So, yeah. If you find yourself with extra time on your hands, open invitation at my house. Don’t worry about imposing- if I get tired & need to nap, I never hesitate to say so. 🙂

the eyes have it

Tomorrow is my consult with the first corneal surgeon. Reminder from the last post:

I have “map dot fingerprint corneal dystrophy”. An optometrist sent me to an ophthalmologist, who’s sending me to a corneal surgeon for a consult. The eye is 80% collagen, so my pretty little Ehlers Danlos seems to be hitting those eyes too. We’ll see what we hear at the consult. My friend Terri’s mom works at a renowned eye clinic in Birmingham, and says there are surgeons there who know about EDS. I’ll probably head over there for a consult too.

Keep your fingers crossed for me (meditate, send love and light, pray, roast marshmallows… whatever you do when you want something to go well for someone). The “probably” above has changed to “definitely”. If their recommendations differ, I’ll probably go with doctor #2 since he knows about EDS.

People touching my eyes gives me the creeps!

long overdue update

I can’t believe I haven’t updated this for so long. So much has happened, so I’ll try to keep it short. I’m sure I’ll be repeating a lot of what Christian posted when I was hospitalized, so bear with me.

The surgery was excellent. My previous 3 were so awful I was prepared for the worst, but when I woke up, my pain was soooo minimal. After a short stay in the hospital, we stayed in a hotel close by, since the doc wanted to keep an eye on me. The end result – I’m now fused down to C7 (the last vertebrae in your neck) rather than to C6. Unfortunately it means I have zero left to right movement, but I’ll take that over constant and excruciating neck, back, and shoulder pain.

Shortly after we returned to Atlanta, things got really messed up. I had so much pain in my left arm I couldn’t touch it, and I spiked a big old fever. So that led to several days in Piedmont Hospital. It was really scary and I was out of my mind, seriously whacked out, because no one knew what was wrong. They finally figured out I had a DVT (blood clot) in that arm, and were able to treat it so I could go home. That was a really bad week. I felt alone and terrified. After leaving the hospital I had a 3 month visit to a blood clot clinic (checking in once a week and adjusting my meds as needed). Those 3 months are up, so I should be discharged any day now.

I’ve had what I’m calling “the big 3”. #1 and most important was my neck. I’m right at the tail end of recovery now. #2 is my vision loss. (Writing this now, for example, I’m relying on knowing where the keys are, zooming way in, and correcting anything I see with red dots under it.) I have “map dot fingerprint corneal dystrophy”. An optometrist sent me to an ophthalmologist, who’s sending me to a corneal surgeon for a consult. The eye is 80% collagen, so my pretty little Ehlers Danlos seems to be hitting those eyes too. We’ll see what we hear at the consult. My friend Terri’s mom works at a renowned eye clinic in Birmingham, and says there are surgeons there who know about EDS. I’ll probably head over there for a consult too.

Last but not least of the big 3 is my joints. This is the one that will stay with me, but we’re looking into ways to make it not as bad. It’s common for anyone who’s 41 to have joint issues (e.g., arthritis) as part of the aging process. So I probably have that going on with EDS magnifying it. When we go anywhere I go in a wheelchair because of the pain walking causes. At home I mostly stay on the couch, but I’m about to get a walker because it’s getting harder to walk within the house. We have a bunch of things to do, so I’ll save those for future posts since I’m committing to keep this blog current now.

I welcome any and all company! I can’t make plans to go anywhere because I never know how I’ll feel, but even if I’m having a rough day I can always have folks over. That’s what living on the couch is for. 🙂

Oh, one more thing. Apparently Dr. Henderson, who did my surgery, is some kind of artist, because you can’t see the scar on my neck. He cut into a fold in the skin and made it tiny. I do have to admit that part pissed me off. I wanted another one to match the one on the right, because I seem to have this thing about appearing tougher than I am. No matter how many tattoos and scars I have, though, all my toughness disappears when I’m being rolled around in a wheelchair. Lol. Maybe that’s why I’m partial to the blue zones below.

The eyes have it

I’m taking it pretty well, actually. Once an optomotrist said, “dude, glasses won’t correct your vision, I think you have…” etc… I prepared for the worst case scenario. So I’m cool. As long as I don’t get blindsided (pun intended), I can keep it together pretty good.

I saw an opthamologist today, and diagnosis confirmed. I have “map dot corneal dystrophy”. Since the eye is 80% collagen and Ehlers Danlos is a connective tissue disorder, this is probably part of the humpty dumpty shit that’s been chasing me. I have a referral for July 21 for a corneal surgeon exam/consult.

On an exciting note, it looks like I’m almost recovered from that blood clot that kept me in Piedmont Hospital for most of a week. I have weekly checks at a clinic specific for resolving those issues (they’re called coumadin clinics), and they say I’m almost there. I go tomorrow morning, so I’m keeping my fingers crossed. I’ve already asked them about tattoos, and I can get one 10 days after being cleared. I’ve picked the artist and have the concept- I just need to get going on it. All I’m saying for now is to think humpty dumpty. 🙂

A poster in the office today said, “when you can’t control the wind, adjust the sails”. I love that.

The request is still out for company to drop by any time (thank you Terri, Melanie, Gara, Dad, Lizzie, Susan, Megan, & Claire for all coming to see me. Huge thanks ti Lisa, Wayne, and Marco for pre-preparing some meals for us. They were heaven & helped Chris SO much). I love those visits. Hell, just come by & watch a movie with me if nothing else. I’m well past 100 now. Streaming Netflix + a few movies every day = a lot of movies under my belt.

Don’t know me well? Hell, I don’t care. I WELCOME COMPANY! Lol. I can’t go out, but anyone can come in. Except the guy who keeps knocking on the door wanting to mow our yard. He gets on my nerves.

We’re renting a mini-van to make me a bed for a comfortable ride, and making the yearly July 4 trek to the in-laws, leaving Friday & returning Tuesday. Taking into account my nap schedule, I’m usually free 1:00-4:00 weekdays, & almost anytime Sat or Sun. Come over, we’ll chat, and you can have 7 cats staring you down wondering why in the hell you’re in their house.

Mwah to you all.

Discharge! I know, WTF? Right?

**posted by Christian**

I’m almost ashamed of that title, but it’s oddly fitting.

The headline first: Chase is out of the hospital and resting as comfortably as possible at home. I shall, at another time, expound upon exactly what happened, but suffice it to say that my understanding of events is different than it was when said events were happening.

While we have a long road ahead of us, this is very good news. Monday morning at 9:00 we’ll be at his GP’s office for a blood test. If you get clots and are seen by a doctor in the US, you get a script for Coumadin (warfarin). I’ve dropped that name (I think?) in the past, but I invite you to read the wikipedia article, or at least the the first few paragraphs of the introduction. He’ll be needing at blood tests every week (2 per week in the beginning) which is not welcome news.

But we’ll keep carrying on.