Another day begins

General
1

It’s 6:30 -ish here on the East coast. I just woke up with my best friends…anger and pain. It’s a typical morning in those categories. Within the past year or so, I feel like I have aged 100 years. My back hurts, hands hurt, I’ve become a bit depressed. Every morning has a 30 minute start-up to functionality…sometimes longer. My wife and kids (4 little ones) aren’t really sure how to deal with my situation yet. My wife has been super supportive…but a bit baffled by my Psoriatic Athritis. Mostly it seems as if they believe I have a cold I’ll someday get over. Anyway, my point is I’ve been feeling a bit alone in this …adventure(?). Hell, I don’t know.

This morning, I’m tired on top of those other tangibles. That’s because I stayed up a bit late wandering through this support group. It’s one of the first mornings in a while I feel like “someone” understands me, my frustrations, my pain, my apprehension. I’ve also been able gain some insight into a few of you…albeit brief. You’re out there too.

Anger and pain don’t last long each morning. The commotion of my home quickly sweeps it away getting ready for another day. Kids, school, breakfast, showers…no time to let it get to me. Another 30 minutes and my back will be a bit more functional. I’ll be on my feet.

Today/tomorrow, I start Embrel…I hope. As long as the meds are ready to picked up, the insurance company doesn’t give me anymore headaches and I can get my first-and-only appointment to learn how to inject myself scheduled and completed. I am hopeful not only potential relief from a new drug, but also because I found others like you here.

Thanks for accepting me into the group. I have to go cook breakfast for my family. :slight_smile:

2

We understand and have aged along with you! Family dynamics in any chronic illness scenario is tough. My husband has not processed this at all. This morning, he asked me if I'd hem his pants. Ha Ha Ha Ha. I said okay, I'll try. )My right hand is a mess lately and sometimes I have trouble just holding my coffee cup. It's early on yet, so I'm giving him time. The kids are a little more empathic. My older one has diabetes and understands chronic illness. Anyway, keep posting and reading. I've found much support and comfort in this group. Hang in there.

3

It's really difficult for our family members to understand what we're going through - or how someone who was active and relatively healthy all of a sudden is so severely effected by something they can't see. We still LOOK the same.

It became a little more real for my family when my first set of canes arrived and really set in when my wheelchair joined the family. Then I went on Enbrel and it did wonders for my legs and I was barely using the wheelchair or canes and they seemed to forget a bit that I was still exhausted, in pain, etc. It's definitely a process for the entire family.

How old are your kids? I have five (homeschooled) kids: 13, almost 12, almost 10, 6 and 4 and take care of a 4 year old, 2 year old, and 10 month old (and in October or November, an infant!).

I wish you luck with the Enbrel!!!

4

You just never know what it takes before they "get it" I'm not saying my wife isn't supportive as I've had to use a cane off and on for years. And then a week later pack 20 miles through Glacier park.

How ever the first time I used the handicapped parking permit at Costco, she realized the years I spent circling the parking lots at the Box stores wasn't just a game. When I got a good spot I joked about calling one of the boys to come pick me up so we could have the same spot the next day. She was relieved though that it was a red permit (temporary) I had an appointment just before it expired, and didn't say anything - NOT a good idea, When the permanent one came, following that appointment, she cried for an hour (she has finally accepted that on some days I do need it.)


The first time I had to use the go cart at Wal-mart (we only go twice a year) though was an experience. Trust me on this - Practice in an open area until you are sure you can judge distances.... (and even then stay away from that big display with all the play balls)

Your writing is beautiful and eloquent. Its amazing the power of words when not using passive voice. That translates to dealing with PsA very well too. My business students would get pretty angry when I gave them back a paper for a full rewrite because it was in passive voice. There is no room in business for passive and ceertainly no room for passive when dealing with PsA

I apologize for this waxing.... In any event, The one thing you do not need to worry about (and shouldn't) is how your kids will deal with it. They accept almost anything as normal and adapt to a new normal very quickly. We could learn a lot there.

5

Wow! Thanks for the reply. I have four kids ages 10,8,6 and 4 now. It's so frustrating because I have always been very athletic and active as a person and a parent.

I just can't believe how fast the PsA has progressed and how it has affected my life. (i've been a bit of a grumpy person but I don't mean to be.) Today is really the first day I've been able to communicate with others about real life situations around PsA. I feel 200% more informed now than I did yesterday.

So, there is hope in the Embrel? Pain relief, etc.? Can I ask you how long you've been using Embrel and if there any pitfalls you suggest I avoid? I am so excited, nervous, scared, happy.......well, I think you know how I feel. First Embrel injection tomorrow at 9:00 a.m. at the Rhuem's office.

Thanks again for talking with me.



nym said:

It's really difficult for our family members to understand what we're going through - or how someone who was active and relatively healthy all of a sudden is so severely effected by something they can't see. We still LOOK the same.

It became a little more real for my family when my first set of canes arrived and really set in when my wheelchair joined the family. Then I went on Enbrel and it did wonders for my legs and I was barely using the wheelchair or canes and they seemed to forget a bit that I was still exhausted, in pain, etc. It's definitely a process for the entire family.

How old are your kids? I have five (homeschooled) kids: 13, almost 12, almost 10, 6 and 4 and take care of a 4 year old, 2 year old, and 10 month old (and in October or November, an infant!).

I wish you luck with the Enbrel!!!

6

LOL! tntlanb...wax away. I've always appreciated (and always will) good writing and a great sense of humor.

It's a funny thing...this thing called life. My Mom and dad, now in their late 60's were completely freaking out when I told them what was going on. I'm 40 by the way. My mother is a sensative person...always going overboard in my humble but extremely accurate opinion. Anyway, I had to remind her, and myself at times, that I have know young people who have passed unexpectedly for various reasons, car accidents and such. I consider myself one of the very fortunate ones...even right now. PsA, I can deal with it. Business students on the other hand....not for me :)

Unfortunately and fortunately, I've been unemployed since January. I had been a Plant Manager on a local level as well as a domestic manufacturing consultant. Besides keeping the "kids" in line in my NH facility, I had spent an massive time on the road setting up new facilities, handling mergers, aquisitions, tearing down operations, etc. Not exactly fun but it kept me extremely busy.

I had pain throughout the last number of years which I chalked up to crossing into mid-life, having nothing resembling a consistent lifestyle, late nights, early mornings, always being on my feet, etc. It's become apparent that my time on the road was probably both helping me mentally (distraction) but hurting me physically. Anyway, I took a severance option and a quick exit as the manufacturing was quickly moving overseas. Got out while the getting was good. I've been reunited with my wife and kids. I've slowed down and started to enjoy life. As well, I've been able to focus on improving my health and well being. So, even though I'm "in between" jobs, I've taken this time as a huge positive in my life. Thanks GOD my wife is my H.O.T. sugar momma! She's a CPA :)

So, in conclusion...(I know your thinking "when is this guy going to get to his point!?!?")...I'm in a great place mentally, I'm still active. I have a great family who will eventually understand what is actually going on. Now that I think of it, maybe I've been down playing too much. I should probably rumble and groan more. >>>More sympathy backrubs from the First Lady???? Perhaps.<<<

1st injection tomorrow. 1st day of the rest of my life. Let's get it on!!!!

Thanks for the reply and please keep in touch!

tntlamb said:

You just never know what it takes before they "get it" I'm not saying my wife isn't supportive as I've had to use a cane off and on for years. And then a week later pack 20 miles through Glacier park.

How ever the first time I used the handicapped parking permit at Costco, she realized the years I spent circling the parking lots at the Box stores wasn't just a game. When I got a good spot I joked about calling one of the boys to come pick me up so we could have the same spot the next day. She was relieved though that it was a red permit (temporary) I had an appointment just before it expired, and didn't say anything - NOT a good idea, When the permanent one came, following that appointment, she cried for an hour (she has finally accepted that on some days I do need it.)


The first time I had to use the go cart at Wal-mart (we only go twice a year) though was an experience. Trust me on this - Practice in an open area until you are sure you can judge distances.... (and even then stay away from that big display with all the play balls)

Your writing is beautiful and eloquent. Its amazing the power of words when not using passive voice. That translates to dealing with PsA very well too. My business students would get pretty angry when I gave them back a paper for a full rewrite because it was in passive voice. There is no room in business for passive and ceertainly no room for passive when dealing with PsA

I apologize for this waxing.... In any event, The one thing you do not need to worry about (and shouldn't) is how your kids will deal with it. They accept almost anything as normal and adapt to a new normal very quickly. We could learn a lot there.

7

I hope that "first" goes well.... In all honesty I could "feel" something going on coming back from the Doctor's office (granted it was just the psoriasis quit burning). Improvement comes slowly and differently for everyone. Most of us have an Ah Ha moment one day when we realize something has started to happen.

Interesting background. One of the manufacturers I have consulted for is bringing the bulk of their manufacturing back from overseas. It certainly hasn't been smooth for them. Quality Control is not my forte, but I can't get them to understand that 100% inspection comes no where close.

There may be some consulting opportunities there as its becoming a trend..... One of my colleagues has built up a pretty good business specializing in repatriation of overseas managers/observers.

8

Scott I hope you have the same degree of relief I have had. It was 4 hours and I could feel less inflamation in my knee. In 4 days I knew Humira was for me. When I started on MTX I swore that I could feel it in my PsA joints. A tingle or a burn sensation slight but there. I called the rheum nurse and she confirmed that other patients have had similar experiences.

Please please be prepared that you will not be the same as you were before PsA. I thought (wrongly) that once I had my knees replaced life would be ticketee boo (PsA would be conquered) . and so fell into a depression cause my ankle went south and I could not walk again. I mention this cause you say you are a little bit depressed. It is never a little bit. This disease takes it's toll on everyone . Next time you see your physician please mention the "little bit depressed to him" he will probably try to "pill you" but sometimes having someone to talk too can be enough.

good luck to you tommorrow. Enbrel is going to be your ticket to better days ahead. And if you are not looking for a job what about being a kept man and a stay at home Dad. That is a better job than you will find anywhere. Pay is the pits but the bonus's are better. :)

9

Best to you Scott,

I'm a 6 week in Embrel baby now, feel some good, storms still kill me, and MD seems to be storm central lately, but have some other things in the AI family dogging me besides the PsA. We all wish you nothing short of success, and believe me when I tell you that having this cast of crazy-wonderful folks to laugh and cry with make things easier for you and for spouse, as they will hear less of it, while we share more of it.

Nice to see that you and our lambchop get on like you do, surely he gets a bit tired 'clucking with the hens' all of the time! Scott, don't be tripped up by the high IQ and razor sharp wit, he also has a heart of gold!

Good luck to ya, Bud and welcome to the chicken house!

10

Hi again, Scott!

I'm actually off of Enbrel and on Remicade now. The Enbrel did AMAZING things for my legs (knees, ankles, feet, toes) and arms (elbows, wrists, hands, fingers), but I have the spondylitis variant of PsA and my SI joints and back were getting worse and I developed PsA / spondy in my chest. On Enbrel I went from using mostly 2 canes or a wheelchair to walking unaided a good percentage of the time. Because of the SI joint fusions and damage already done by my PsA, I won't ever be pain-free and most likely won't ever not need canes/wheelchair sometimes. The pain was much less. For me, it was around the 9 week mark where I realized I had more energy, kept forgetting my canes at home, and could make it through more than one or two errands without feeling like I would collapse afterwards.

Your sense of humor and good outlook will take you far!

Enbrel injection tips...makes sure the enbrel is out of the fridge for 30 minutes - cold Enbrel HURTS going in....even just slightly cold. Make sure you're well hydrated before injecting. If you get nervous or forget what you're supposed to do, go to enbrel.com or whatever their site is and watch the video of the guy injecting himself. Remember to breathe. My four-year-old, who is obsessed with anything medical / having to do with the inner workings of the body, counted to 15 for me while I was injecting and insisted on putting a bandaid on the injection site. Some people find using a cool compress before and/or after the injection helps. For many, it's not as bad as they think it will be. :)

11

So, how are you Scott? Did the shot go okay?

12

Hey! The shot was jut fine! Easy, quick, painless, no burning. Wonderful experience all around. The anticipation on the other hand was a different story. I’m a sissy…ask my wife. Lots of whining, moaning…fishing for sympathy. :slight_smile:

I’m doing great. Outlook is good. My mom and dad arrived to stay with us for a couple weeks. Mom is a fantastic cook. Summertime and the living is easy.

So, i’m kinda of unclear on the whole alcohol intake thang. I’m NOT a raging alcoholic by any means but I do like a glass of Savignon Blanc (New Zealand only, post 2006- I recommend Kim Crawford) or a Blue Moon from time to time. What are this groups recommendations on the topic? I’ve decided to completely become un-fun and quit drinking due to the Embrel. >removing underwear from head<<br />
I look forward to your perspective!

13

That is a lamb topic, I did a shooter binge with a girlfriend in the beginnings of Sulafsalazine and prayed to die... that was many, many moons ago!

14

I'm scared to death to drink alchohol. I'm on mtx. Mtx is processed through the liver. There are many many links to auto-immune disease and dysfunction of the liver to begin with. I used to drink 2-3 glasses about 4 days a week of Cabernet. Now, I am trying to do everything to help liver health with foods that are liver-happy. My liver panel was mildly elevated before starting mtx, so I don't want to add to the problem. On the upside, the Tramadol (if I withold it for awhile to undo a tolerance) does make me feel as though I've had a few and gives me a nice chillax feeling. : )



Scott said:

Hey! The shot was jut fine! Easy, quick, painless, no burning. Wonderful experience all around. The anticipation on the other hand was a different story. I'm a sissy...ask my wife. Lots of whining, moaning...fishing for sympathy. :)

I'm doing great. Outlook is good. My mom and dad arrived to stay with us for a couple weeks. Mom is a fantastic cook. Summertime and the living is easy.

So, i'm kinda of unclear on the whole alcohol intake thang. I'm NOT a raging alcoholic by any means but I do like a glass of Savignon Blanc (New Zealand only, post 2006- I recommend Kim Crawford) or a Blue Moon from time to time. What are this groups recommendations on the topic? I've decided to completely become un-fun and quit drinking due to the Embrel. >removing underwear from headbr />
I look forward to your perspective!
15

well I told the doc I had 2 drinks last week. he said Oh my "you alkey you" my liver counts stay about the same. I donot drink every day nor every week. But once in a while I have one.
New Zealand eh I got hooked on german wine while there in Januarybut will try that Kim Crawford. Everything in moderation.
DMaraJade said:

I'm scared to death to drink alchohol. I'm on mtx. Mtx is processed through the liver. There are many many links to auto-immune disease and dysfunction of the liver to begin with. I used to drink 2-3 glasses about 4 days a week of Cabernet. Now, I am trying to do everything to help liver health with foods that are liver-happy. My liver panel was mildly elevated before starting mtx, so I don't want to add to the problem. On the upside, the Tramadol (if I withold it for awhile to undo a tolerance) does make me feel as though I've had a few and gives me a nice chillax feeling. : )



Scott said:

Hey! The shot was jut fine! Easy, quick, painless, no burning. Wonderful experience all around. The anticipation on the other hand was a different story. I'm a sissy...ask my wife. Lots of whining, moaning...fishing for sympathy. :)

I'm doing great. Outlook is good. My mom and dad arrived to stay with us for a couple weeks. Mom is a fantastic cook. Summertime and the living is easy.

So, i'm kinda of unclear on the whole alcohol intake thang. I'm NOT a raging alcoholic by any means but I do like a glass of Savignon Blanc (New Zealand only, post 2006- I recommend Kim Crawford) or a Blue Moon from time to time. What are this groups recommendations on the topic? I've decided to completely become un-fun and quit drinking due to the Embrel. >removing underwear from headbr />
I look forward to your perspective!
16

Hey Scott, I am 41 and new to this whole thing too. I took my first Humira shot on Saturday at home, had my husband watch me to make sure I didn't have any allergic reactions. (I am not scare of needles) I went to the Rhemy yesterday (I also take 7 2.5mg of methotrexate.) I have had no improvement as of yet, she said it takes from 2 weeks up to 3 months to improve the swelling and pain. Who knows. I am waiting for the day when I can say Wow, I can move my fingers and not drop anything or hurt......I am hoping it happens closer to the 2 week mark than the 3 month mark. Good Luck. I have three children and I know it sucks when you look fine on the outside, but hurt like crazy on the inside.

17

Hmmmm. My last two labs revealed mildly elevated AST and ALT levels. I think I’ll wait to cocktail. I still have to follow that up with my GP. Thankfully, my brother and his wife are both Physicians Assistants. They have been a great resource. They recommended a drink now and again in moderation, but It just doesn’t feel right.

So why don’t “they” make a drug…any drug…that has awesome side affects? “Side affects include phenomenal muscle growth, thick hair, masculine chiseled chin, fantastic personality. If you experience women throwing themselves at you for longer than 4 hours…please don’t call anyone, just enjoy it.”. Why can’t these lab rats invent that drug that does all that AND reduces pain and swelling? Just a thought.

Where the HECK is Lamb? …Lamb? …LAMB??

18

Good luck to you as well TStrick! Let’s schedule an arm-wresting tournament in anticipation of feeling better. 3 months from now? And I’m not taking it easy on you because you’re a girl. More because I have arms like earthworms and the posture of wet string. You should be able to smash me. But seriously, keep up the positive outlook. There are many people who would trade places with us in a heart-beat. If you have any thoughts on a trophy design for the tournament, hit me back.

19

I came in from the hot tub to make this post as for some reason my Galaxy Tab doesn't like this site. Haven't used my laptop at home for some time. Not sure what a shooter binge is, but suspect it was something like the little tiny cups of jello the girls from the bank made for the Bank tail gate last fall. Missed the whole first half and wasn't quite right for a few days. Never trust 20 somethings to organize a party (or maybe we should)..... Any way no reason to climb on the wagon with the biologics. (enbrel anyway) The senior Doc at my Rheumy practice is a member of the YATES society and knows me well. The Yates society is local businessmans group that raises money for local causes. at least thats what our wives think, The main activity is we share (for a cost of course) single malt scotch (tastings) while some one reads Yates poetry. Any rumors that the reader is also employed at the Fox Club are entirley unfounded (most of them wouldn't know how to read poetry. Any way moderation of course and quality. This of course means you will have to give up Blue Moon. (Micro Brews Go a lot further) Seenie is the wine expert, but there are large volumes of studies coming from Sweeden and Europe (honest) that recommend regular wine drinking for arthritis. It does reduce inflamation. Your Doc of course is the best Source, It is a problem with MTX and some of the other DMRDS, but frankly the Key advantage of Enbrel is you don't need to use things. A number of sources allow on - two glasses of wine per month. I won't say one of the reasons I picked the Rheumy Group I did was because of its connection to the Yates society or that My Cardiologist is also a member. Slightly elevted liver levels are a part of this disease and generally mean nothing. You will establish new norms for nearly everything. Once I have a normal established, I live with it and refuse to give up any p part of my life I don't have to. When I left the Jesuits many years ago I also gave up guilt. I have adopted the Vince Zarony approach to life. When Father Burns warned us against an impure act because we would go blind Vince told him he'd quit when he needed glasses.

As far as that miracle drug, it exists. (Well maybe nt 4 hours with women) Have a T level done There are two tests have 'em both the simple one may show normal but the other one will not. If you are even close, get the replacement if the doc will script it for you. Your pain fighting and energy WILL improve. I suppose I could mention there are some supplements available as well. Those levels are COMMONLY reduced with PsA.

20

Thanks Lamb. Lots of great info. I really appreciate it.

Interestingly enough, I am a member of M.M.S. Manchester Malt Society. Same set-up. Professionals tasting Scotch among other things. Too funny!