Well, I think the day has finally come...

[ThomCat]

The Reumatoid Arthritis has spread into both of my ankles. When it was just in my toes my balance was horrible but I could still walk with crutches. Now that it's in my ankles too every step comes with grinding pain that spreads down into my feet and up to my knees.

So I've reached the final choice, the heavy-duty toxic drugs or the wheel-chair. :shrug:

Do I want to destroy my liver and maybe be able to walk for another few months/years, or do I want to save my liver but give up walking?

I've been avoiding this decision for a while now because the pain in my ankles was minor and sporadic, but as of yesterday it's now constant. As of today it's excruciating. I have an appointment with the VP for office management this afternoon to discuss how to make my office wheelchair accessible.

[Phillycat]

1. Wheelchair.

You will adjust to the wheelchair, but with the meds you will shorten your life. Not worth it.

[ThomCat]

3. shortening life = not worth it?

That's something else I'm considering. I'm in constant pain. Do I really care if I shorten my life?

That might be one of the advantages of using the meds as far as I'm concerned. My real concern is what would the effects of the liver damage be during that remaining time? The last thing I want is to suffer more because of the liver problems.

[seemunkee]

10. Wow, Thomcat

That is a harsh assessment of your options, but I guess it is unfortunately very real for you.
You seem like an intelligent and interesting person with some very loving friends. I'm sure they would love to have you around for a long time.
:hug:

[ThomCat]

14. Thank you. I'd like to be around as

I'm in good enough shape to be social and HAVE friends. But when the day comes that I'm so immobile and in so much pain that I'm no good to anyone anymore then I don't want to hang around too long after that. Prolonging my life is not a consideration. Prolonging my productive life is.

I already have a lot of good friends that I only see once per year or so, because no matter how much they claim to love me they just find it awkward and inconvenient to hang around someone who's life is so different and so restricted.
:shrug:

[La Lioness Priyanka]

2. wheelchair.

maybe you'll get one of those scooters and scoot around everywhere~

:hug:

[ThomCat]

5. Wanna help me make my home more accessible?

:P

I'm going to need some strong bodies to help me make some changes.

[La Lioness Priyanka]

7. yes, after dec 17th till mid january i can be at your service

[DarkTirade]

13. That part's fun... just finished doing that here for my grandpa.

I still might have to install another handrail in the bathroom. The last one my dad put in was a little too far back.

[ThomCat]

15. My building management is installing rails for me

but they're taking their damned sweet time doing it. :(

[DarkTirade]

40. Best of luck with that. I'd help if I wasn't completely across the state and unable to legally drive

(*&%ing NY DMV won't let me get my damn liscense without seventeen forms of ID and my original birth certificate. And my regular liscense expired on my birthday, 4 days after I got here. Unless they're willing to hand out my birth certificate to a relative I send to pick it up (my brother lives about 30 miles from where they keep the records in VT where I was born), it'll actually be quicker to renew my FL liscense and wait for them to mail it to me than it will be to get the right paperwork to get a NY liscense.

Of course, the entire REASON I moved up here was to be able to help out my grandparents... most namely to drive my grandpa to and from dialysis 3 days a week. So my ability to drive is LITERALLY a matter of life and death as of next week when he's discharged from the rehab center.

[ThomCat]

41. Damn! I really hope you can get that resolved quickly.

I'm glad you're there to help, regardless of what the shit the DMV gives you.

[DarkTirade]

47. Yeah, if worst comes to worst then my grandma can drive and I'll just be along for the ride

to help my grandpa in and out of the car and whatnot. Right now he's switching between walkers and wheelchairs to get around, and my grandma just isn't physically strong enough to help when needed.

Still, it's a pain in the arse. And not the good kind.

[Ellen Forradalom]

31. Well, where are you?

PM me. Maybe we can find some strong DUers to help out.

[ThomCat]

32. I'm in NY City.

Rearranging the house is probably the only part of this mess that I think won't be a problem.

I know enough local DUers and offline friends to get someone to help out at some point. :)

[Ellen Forradalom]

33. Cool beans.

I'm in CA, can't do you much good except offer moral support.

I'm sure it's a bitch to think positive when you're in pain...but at least try for our sakes. We're much too fond of you.

[ThomCat]

35. Will Do!

:patriot:

:hug:

[flvegan]

11. Vote 2 for the scooter!

Dude, you could lower it, little bit of bling, DUBs, fuzzy dice, big subwoofers.

A hydraulic kit that makes the front bounce up and down!

Seriously, don't look at wheels as a negative.

[La Lioness Priyanka]

12. yeah someone in my office has a scooter she calls her hummer

its awesome and fast.

[ThomCat]

16. I'll make sure I get pictures of the base model

and I'll post a thread looking for suggestions on how to customize it. :)

[seemunkee]

57. Is an iBot an option?

http://www.ibotnow.com/ This is the technology that led to the Segway.
No idea what the situation is concering the costs and insurance.

[ThomCat]

60. Wow. That's sweet. But..

it looks like my insurance carrier is one of the few big ones that doesn't reimburse for any portion of the cost. x(

[GreenPartyVoter]

58. Another scooter vote here

[VenusRising]

4. I'm sorry you have to make that decision, ThomCat.

It's just not fair any way you look at it. I'm sure that whatever decision you make will be the right one for you.

Sending you good thoughts and vibes. :hug:

Hang in there sweetie. :loveya:

[ThomCat]

6. Thank you.

:hug:

I know it's hitting me hard today. I'm already terrified because I have to fly tonight, and that's going to be a real excersize in concentrated agony. Having to face this at the same time is just kicking me into a bit of a depression. :(

I'll deal with this, and like all the past changes I'll adapt and adjust. I knew this day was coming. I just hoped I had longer.

[LynzM]

20. I remember you talking about how hard flying is for you...

:hug: :hug: :hug:

And another :hug: for having to face this decision. It's obviously not an easy one. I wish we were closer-by so that we could drop in on weekends and help you renovate and hang out.

[ThomCat]

21. Hi LynzM!

:hug:

That would be awesome. I wish we were closer too. :)

I was on he phone last night with my ex, and one of the things we discussed was making decisions. I'm very good at making decisions, and she hates having to decide on almost anything. We were joking about the difference.

I suppose it's a good thing that I'm the one who gets to face the nasty decisions. I can more or less handle them.

[malta blue]

8. My dear friend...

I am so saddened to hear of this. I wish every day that I could take your pain away. :cry:

I have no answers for you as either choice involves sacrifices that only you know you are willing to make.

I can only offer you my friendship and support.

:hug: :cry: :hug:

[ThomCat]

17. What you offer is awesome.

:loveya:

:hug:

[momophile]

9. please take care of yourself, ThomCat

I'm sending good vibes your way right now.:hug:

[ThomCat]

18. I can definitely use good vibes today.

:hug:

[lost-in-nj]

19. I'm sorry that you even have to think about making a decision,

let alone make one....

Have fun on your trip.....
laugh....

Happy Thanksgiving!!!!

:hug: :hug:

lost

[ThomCat]

22. I am going to do everything I can

to enjoy the hell out of this trip despite anything!

:hug:

[IndianaJones]

23. how about a Segway? nt.

[ThomCat]

24. You have to stand on segways.

And the problem is that I can't stand anymore without excruciating pain.

[IndianaJones]

25. check out this link

http://www.segseat.com/

[ThomCat]

27. Very cool!

And that's less expensive that most electric wheelchairs and scooters. Thank you.

I have to see what my insurance covers. It's going to be my big priority on Monday. x(

[flvegan]

29. That's pretty badass.

Nice find, IJ.

[hfojvt]

26. I say 'ride the wind'

it's more fun to ride, and it sounds like walking is adding to your pain. The only drawback is the lack of exercise for your legs. Can you go swimming a couple times a week?

[ThomCat]

28. I wish.

Joining a pool here costs more money than I have. Having a disability has proven to be very expensive. There's the Y, but even that is fairly expensive, and it's so crowded that I hate going in there. :(

And as long as I'm able to work, my job demands that I be here a whole lot of overtime hours. So the most I would be able to swim is once per week.

I belonged to gym for many years, so I could keep up on my excercises during lunch breaks and late evenings, and keep as much function as possible. But the affordable gyms don't have pools.


You're right though. I need to make sure I keep excercising. My routine is definitely changing. I'm not sure what I can still do safely.

[hfojvt]

36. maybe a stationary bike?

Or the cheaper alternative which I have (an never use) - a set of rollers for a bicycle and a cheap bicycle.

[ElsewheresDaughter]

30. take care and get Omega-3s... eat lots of fish, and fiber...

Avocados- Avocados
The Power: Oleic acid, an unsaturated fat that helps lower overall cholesterol and raise levels of HDL, plus a good dose of fiber. One slice has 81 calories, 8 grams of fat and 3 grams of fiber.

Ginger- The Power: Gingerols may help reduce queasiness; other compounds may help ward off migraines and arthritis pain by blocking inflammation-causing prostaglandins. A teaspoon of fresh gingerroot has only 1 calorie, 0 fat and 0 fiber. Peel the tough brown skin and slice or grate into a stir-fry.

eat always plenty of grain products and vegetables, and fruits

[ThomCat]

34. All of that is awesome

except the fish. I've been a vegan my entire adult life. :)

One of the great things about NYC is that it's very easy to be a vegan here, and maintain a very diverse diet with a lot of very fresh produce.

[ElsewheresDaughter]

39. a vegan friend of mine for 10 years lived on tofu and has now stopped eating it and...

his arthritis is almost completely gone....his feet and lower legs(knees were really bad and now is pain free....just something to consider...maybe soy inflames?

[ThomCat]

42. I'll check that out.

It's possible. I don't eat a lot of soy, but I drink a lot of soymilk.

I'll cut that out for a month and see if it has any effect.

[Gormy Cuss]

37. Wheels.

Try it for awhile. You can choose the liver-eating drugs later.
I'm sorry that you have such a choice to make, Thomcat.
:hug:
I have a neighbor who uses a motorized chair for mobility but still stands as often as he can to keep his legs limber. He uses swimming as exercise.

[ThomCat]

43. I had a meeting with my boss to discuss this half an hour ago.

There is no room in my current office for me to park a wheel-chair or scooter. They'd have to move me.

There also isn't a single handicapped accessable bathroom in this entire 48 story building. So I'd have to get up on crutches to get into a bathroom.

The logistics of how I'm going to keep working is already getting complicated. I hate this shit. x(

[Gormy Cuss]

48. Ugh.

Maybe with some time to think about it the boss will figure out a solution, although the bathroom deal doesn't sound good.

It's amazing how much easier it is in post-ADA buildings.

[wicket]

38. I'm so sorry to hear this

Wish there was something I could do :( :hug:

[ThomCat]

44. My boss asked me if I believe in miracles.

x(

I wish there was something anyone could do too.

Kindly listening to me gripe is wonderful. :hug:

[wicket]

61. Well, I'm always here

:hug: You are definitely a kindred spirit. If you ever need an *ahem*, herbal solution, let me know ;)

[Prisoner_Number_Six]

45. I had to make the exact same decision.

I have psoriatic arthritis- it's a condition similar to yours. It is in my feet, ankles, knees, hips, lower back, hands, and neck. I had to have my first total knee replacement at the age of 42. I had to have it redone five years later.

Four years ago my doctor told me about Remicade. Being in constant pain like you, I had to make the choice. I decided to give Remicade a try.

The miracle I now need to mention is, eight HOURS after my first infusion, ALL THE PAIN WAS GONE. For the first time in over eight years I stood there waiting for the normal background throbbing and aching to start up again.

In four years that pain has never come back.

They do a blood screen every time I go in for my infusion- so far my liver panels have remained normal.

Wheelchair or drugs?

I chose drugs.

My body tells me I chose wisely.

Wanna go for a nice long walk in the park with me and my sister's dog? It's great fun!

[ThomCat]

46. When my reumie comes back from Maternity leave

(I am not sure I like the doctor covering for her) we're going to have a serious discussion about this. Because of my other health issues she did not want to put me on Remicade. But she left it open as an option if I got to where I am now.

If I can take it safely, that would be wonderful.

I'd love to join you on that walk.

[yellowdogintexas]

71. my brother in law's life changed completely after Remicaid. He is a farmer and

that is some hard physical work, under the best of conditions. I was up to visit in September 2004 and he could barely move. I was back in October for my mom's funeral and I was not sure it was the same man. He was amazingly improved. They do a home injection 2x per week..Wednesdays and Sundays, my sister and their daughter can both administer them.

Joe had Graves'disease, which is also an autoimmune disorder and his thyroid had to be destroyed to stop the storm. The RA came in later. He has had a hip replaced and has some knee pain but nothing like he had before he started Remicaid.

I hope you can find a way to just feel better.

And glad you got a flight!

[fizzgig]

49. i wish i could help you with the choice, thom

i will give you all the love i have, tho :hug: i'd be there in a heartbeat to help if i could

a wheelchair or a scooter might be the best option, but i know it comes with a few obstacles (like your office, i can't believe they don't have any accessible bathrooms! how do they get away with that?)

[ThomCat]

51. ADA accessibility requirements all have loopholes.

There are grandfather clauses, so existing buildings don't have to be accessible unless you renovate the entire building. Then, you're required to include accessiblity in the renovations.

But in a large office, where renovations are done floor by floor, they never meet the requirement for having to add accessibility.

On top of that, there are hardship exemptions if the cost to make a workspace accessible is considered excessive. Though I don't know what the real numbers or limits are on that.

But the end result is that any big city that was essentially already developed pre-ADA won't have many accessible spaces.

[fizzgig]

52. that really sucks

the thought of that is still mind-boggling to me

[Flaxbee]

50. I vote for wheels.

It's a shitty decision you have to make, but were it me, I'd choose a wheelchair. Because you might suffer liver damage with the meds and still live a long life, only with a compromised liver. And/or it might get to the point where you'll need the drugs anyway at some point, so you might as well go the least toxic route as long as you can.

One of my brothers-in-law has psoriatic arthritis, and it was disabling him - unable to bend an arm, knots all over his vertebrae (and he's very tall, 6'7", and his back was just this mass of knots, he was truly wracked with pain) so he couldn't lie down, and in continual pain, whether he put any weight on his joints or not. Took the drs fricking forever to diagnose it (I guess it's relatively rare). So he's taking a drug that is toxic to his liver, and must be injected, etc., but after a few months he was able to scale waaaay back on the injections because pain management had been achieved (I think instead of injections once every three days he can now go up to 10 days between shots).

The other thing to think about (if you haven't already) is to check with a dietician or research the anti-inflammatory benefits of ginger (as an earlier poster mentioned). Ginger in the right formulation (I don't recall if it's powdered, or how it should be taken) really is supposed to provide some real pain relief.

And finally, I don't know how you feel about alternative therapies, but have you thought of acupuncture, or even something 'undocumented' like polarity therapy, to relieve some discomfort? I know these are an extra cost that are probably not covered by insurance, but I have a good friend who is very knowledgeable about all this if you'd like more information. She also will set up a barter payment system in some cases (she's in Virgina) so she might know others who do as well. Just PM me if you'd like more information.

I wish I could take your pain away, ThomCat. And I hope your upcoming travels are as hassle-and-pain-free as possible.

:hug:

[ThomCat]

53. I have a referal and a bunch of recommendations

for a great acupuncturist who is also a physician here in Chinatown. Unfortunately, insurance doesn't cover acupuncture, and I'm already at my limit for what I can budget because of all the disability related expenses I already have. So I have never gone for the acupunction.

Acupressure and trigger point massage did wonders to control my pain for years, but I was paying over $8,000 per year out of pocket for it, and that's just not an option anymore. I don't think I could safely get any time of massage at this point anyway.

[rug]

54. Tough choice.

Although I think you've already decided what's best for you.

[ThomCat]

55. Until I talk to my doctors I'm leaning towards the wheels

but I won't decide until I've spoken to my pain management doctor and my rheumatologist. (or at least A rheumatologist, because mine isn't available right now.)

I'm a very cautious person, so I can't seriously prefer the steroid/heavy med option until I get a whole lot more information and assurances.

[lizziegrace]

56. Oh Thom. :-(

:hug:

I don't know what to say. Let us know what the VP says.

[ThomCat]

62. He says he'll do what needs to be done.

But they've never had to make an office accessible before. I don't think they have any clue what might be involved. They'll wait until I show up in an electric wheelchair or scooter and then try to figure out where to fit me. They won't give any thought to how this affects my work until the problems become obvious. :(

They're going to end up moving me out of my office and into an open cubicle. I don't see that they'll have any other option.

[lizziegrace]

64. ...

It's good they're going to be accomodating.

I assume you're not going away today? :hug:

I'm around this evening. Please call if you feel up to it.

[ThomCat]

65. I'm traveling anyway. I'm just paying a lot more to get

door to door cab service so that I don't have to walk. x(

Once I get to Buffalo I know a couple of places to borrow a wheelchair for the weekend, and my friends won't mind pushing me around. :)

[lizziegrace]

68. Good

I'm glad you're still going. Infomaniac will spoil you rotten too. ;)

:hug:

[JustABozoOnThisBus]

75. Consult with an architect

Maybe a big building has a contract with an architect. An office seems like no big deal - knock out the door, frame a wider opening, install a bigger door. Maybe with a button or badge reader to open it automatically.

Restrooms are more involved, with wide stalls, strong handrails, wide doors, and accessible faucet handles on a lower sink.

But any building architect should be able to list/price the requirements to bring it up to modern specs.

[KitchenWitch]

59. What an awful decision to have to make!

:hug:

Wish I could take it all away from you.

:loveya:

[ThomCat]

63. I wish someone or something could take it all away

but I don't believe in miracles. :(

:hug:

[redqueen]

66. Wheelchair.

You can bump into people 'by accident' when you're grumpy. ;)

:hug:

[ThomCat]

67. Ooh! That would be a wonderful reversal of the current situation.

I had one asshole today shove a revolving door while I was on the other side of it, and I damned near got knocked off my feet. I really hate some people.
x(

[billyskank]

69. Thom...

:cry:

:hug:

[ThomCat]

70. Billyskank...

Life sucks, but we endure. :hug:

[Tuesday Afternoon]

72. Thom

You are an inspiration to me. You have such grace, courage and strength illuminating from your aura.

[I Have A Dream]

73. I'm so sorry to hear that the situation has gotten worse, ThomCat.

How I wish that whether someone got such things rested upon how good a person someone was. You'd have perfect health if that were the case. :(

I'm sending all the good vibes that I can muster to help you to deal with the situation. :hug:

[noamnety]

74. Not to sound like a broken record in the lounge,

but always check craigslist before laying out money for something big. Today in my area (detroit), there is someone offering up two rascal mobility scooters for free. They need new batteries but otherwise are fine. (Looks like the batteries are just over $100 if you shop around.)

If that had been posted a few days earlier, there was someone on craigslist driving from here to Queens, NY offering to haul stuff in his truck, we could have moved it across country to you for not too much money.

Unfortunately all I see in NY at the moment is a power wheels battery barbie bike - probably not what you envision yourself cruising around in. http://newyork.craigslist.org/que/zip/486058257.html

[SPKrazy]

76. Hell of a choice

I'd go for the chair myself

but the pain is sounding horrendous for you Thom.

:hug: :hug: :hug:

sorry you are there at all

I'll hope for some remitting symptoms for you

[ayeshahaqqiqa]

77. Are you open to alternative therapies?

If so, please check out http://www.futurevisionsfoundation.org, especially the page on Entertropic Therapy.