Need a shoulder to cry on!
 

Sorry guys, I'm just venting, I don't expect anyone to fix anything. My emotions got the better of me right now and I know you are the only ones who can relate.
I get nerve blocks in my neck for my CRPS arm and hand about every 2 weeks and I have to be sedated so I need a driver.
Last week my older son took me because my husband was just too slammed at work. Well, he didn't really have time for me either, He kept pacing around the room saying how weird he felt not working mid-day. He just opened his own firm & only a few clients so far. I FELT LIKE SUCH A BURDEN! If you knew me you'd know that's the last thing I ever want to be.
Now because my P.M. Dr. will be out of town for 2 wks. & she really pushed for me to get one this week as well. I already tried to cancel, but the office staff told me that the Dr. had notes to keep my slot no matter what.
My husband says "why do you need one this week" when I already told him all of the above.
He says "I can take you if I have to, but please try to cancel again tomorrow." My son already gave him a break last week. Then he orders me not to get upset because then he'll get mad and won't be able to sleep.
Now here's the rant:
I thought everyone in my family understood that this is a chronic disease, no cures only treatment options.
Now it feels like they think "OMG can you be well already, this is such a drag!"

I ALWAYS SWORE I WOULD NEVER EVER BE A BURDEN! I'VE ALWAYS TAKEN CARE OF EVERYONE ELSE!
I STILL DO TAKE CARE OF ALMOST EVERYTHING - I JUST NEED A DRIVER!

What is this the support that's promised just becomes too hard?
I'm sure some of you have felt this. Part of me just wants to give up say He** with it all, give up all treatment.
I guess if I can't always be the happy, happy, joy, joy chearleader of the family I can just feel worthless now.:Bawling:

AZ-Di, I completely get what you mean. I hate the slightest feeling of being a burden too, and of course sometimes it's just there no matter how hard you try - because you DO have a chronic condition and you just can't do everything you would want...

Sorry if any of the following sounds like I think I am some kind of counsellor - I'm just trying to say something that might help! ;)

Sounds like your husband is stressed out and has maybe taken his eye off your situation a little. It happens with my husband too - it's when he gets stressed and worried and feels like the world is on his shoulders that he seems to almost resent my problems. Makes me feel so bad. Cheers for that :rolleyes: I doubt he really means to upset you, he's just venting - BUT he needs to realise how hurtful it is to you. I'd wait until he is calmer and then tell him how bad you feel, but that he must try to understand that you have to do these things to treat the CRPS. If you had cancer you would have to go for regular treatment, if you had kidney problems you would go for regular dialysis, if you had an in growing toenail you would go for regular podiatrist appointments. All long-term health issues bring with them regular trips to see medics. He needs to realise that you hate having to go and have them more than anyone!

Has he ever been in the room while you have the procedure? If he has then ask him if he thinks you like having it done. If he hasn't then show him a YouTube video of one being done. Might help him get a little perspective...?

Oh I so know the happy happy joy cheerleader thing! I had exactly that talk with my husband last weekend - why is it always down to me? Why can't you manage to try to remain cheerful when I am feeling bad? It makes me feel so responsible for everyone else's happiness.....yet sometimes I am just trying to find some for myself.

Keep battling on girl. Talk to him and tell him the rants make you feel horrible. Ordering you not to get upset because he'll get mad and won't sleep?! That's not very considerate at all! If things get really bad I occasionally have to remind my husband of the 'sickness and health' part of our marriage - if HE were the one to have got sick, does he not think I would care for him and try to ease his burden? Would I not have tried to hide my frustrations about the difficulties it caused in order to save him from feeling worse than he already did? Normally stops him in his tracks. I think sometimes they just get into a little pit of self-pity and have to be helped out. A bit of flattery, thanks for what they do and a nudge in the direction of guilt and what's right and wrong help us get out of those times.

I really hope you feel better soon, and can keep that appointment. It's important that you go, so try not to feel so bad about it. I'm sure he'll come round again - have you ever read 'Men are from Mars, Women are from Venus'? It's so true it's almost funny :rolleyes: He's gone into his cave, but he will come out again...

Remember that this is not your fault and you didn't choose it. You are coping as best you can with everything it throws at you, and personally I think you do pretty darn well girl. Be proud of everything you do despite your CRPS, and we're right behind you :hug:

Bram.

Don't let it get you down. We all have off days. I had one just the other day. He is slammed at work, he is probably worried about you too. If I could I would go get you and drive you, but I'm on the otherside of NM. I have felt that I need to be happy happy joy joy too. We all do. It suck royal boogers that we are stuck in a body that feels so much pain. We are so use to helping everyone else we don't even think about us. I have been there many times. I had one of those days just a few days ago. Im not saying my pain is worse than yours or we have to suck it up. We can all use a day to vent. Just remember they love you. They really don't mean to make you feel bad. They are also venting about their lack of ability to help you. I have had to get my husband to take time off also to go to med appts. I don't understand why he would want youmto change the appt if your PM is going out of town, but then again I do. He wants to be there but with the way work is he can't. I'm not justifying why he said it the way he did. I'm just saying I can understand why he would prefer the following week when things are calmer and not so stressful. They may not have CRPS but they also feel the effects. Keep your chin up. We do have a tendency to let this get our heads all jumbled up and start thinking it would be better if we weren't around, but I also think we try to be the same person we were before because then we were normal and not this crud we have now.:hug:

Oh AZ-Di, I am so sorry hon! I/we do know how you feel and this just stinks for you. You did all that you could do, and at some point EVERYONE in the family will have to come to grips (just like you’re trying to do)with the fact that you are going to need help. What they truly don’t realize is that you hate this as much as they do! You might tell them that the next time this is needed that you’ll just grab a cab. No matter how expensive and uncomfortable that would be. (I’m such a rebel aren’t I) Perhaps a softer approach would be better and a family meeting, called by you might be appropriate. Explain (again I’m sure) that this is the gig guys. I’m going to need you to pencil me in from time to time, because without this treatment, things are only going to get worse for ALL of us. Gosh this is such a hard thing… My instincts are to get mad, and so I should probably quit my post response now because it really does make me upset for you.

Again, I am so sorry. Please hang in there girl and know that you’re not alone. Great big soft hugs AZ-Di!v :hug:

Ps. For me, sometimes the children are the toughest to make understand. I have several children and my oldest (my son) seems to operate in denial. It frustrates me to no end sometimes.

Sorry...
 

Hey Bram, I know that I must have made you feel this way hon and I am sorry for that. I promise you that it was all in jest, really it was. I think you are a fabulous gal and I love reading what you have to say, always! I relate and identify with you often and enjoy your feedback so much! You make me laugh and I think you have wisdom. That's a beautiful combination. Again, I am so sorry if this statement was from an earlier post. :hug: If in any way I hurt your feelings, please forgive me.

Vrae, I'm never sarky about stuff like this! I certainly haven't taken anything you've said in a negative way - I was quite chuffed at your comments lol :winky: We are two birds of a feather (in a good way I hope!) :hug: you muppet x

Thanks so much! I know all of you have dealt with these feelings too. I sure don't mind feeling counseled or even preached to. I was just so upset and I knew I needed to take it down & react more like the mature woman that I am.

I want to be the person I always was, I just hate how this disease changes life. I DO KNOW from all your posts that you all truly know that feeling as well!
:grouphug:

It might make sense to hire someone to drive you to your appointments and even run errands and help you clean a few hours a week.

Az-Di we all wish we were the same people we were. I would give my left arm to be able to go outside and run and roll around with my son. To be able to do a ton of things I used to do. I can't even walk my dog. So I get her to run around the back yard which is tiny. I have problems even driving into town some days and thats only about 2 miles off this stinky base I live on. It sucks we have to give up so much because of this (yes I am going to say it) damn disease that has attacked us. Thats what this is. Warfare. We are at war with our pain to try to have a semblance of normalcy for us. I am going to fight this war as hard as its trying to bring me down. Sorry for cursing, but some times we have to get it out. We are here for you at anytime. :hug:

Oh good, good, good! :D

Az-Di,

I've been thinking about you all day but just didn't have a chance to write until now. I'm so sorry that on top of you pain you are dealing with difficulties getting to and from your doctors offices. I'm sure your family doesn't really feel as if you are a burden.. no one likes to go to doctors offices/hospitals so I'm sure it has more to do with that then anything else.

I'm in a similar situation with doctors visits as I am 2-3 hours away from anyone of my team of doctors. Like you I am having a difficult time driving and medications often make it unsafe. I often have to explain to my doctors that it is difficult to ask anyone to take basically an entire day off work for these visits. It isn't that they don't want to go but, after literally hundreds of appointments over the past 2 years that is a ton of lost income for my husband and friends all added up! One thing that helped take the burden off of any one person was to reach out to our local church and also to medical ride share offered to persons with disabilities. The ride share doesn't work as well since I live remotely but, in a pinch it is much easier to ask someone to drive the 45min to where they do pick up than to ask for them to take 6-8 hours out of their day. Our local church has been a Godsend in that many ladies are willing to help in anyway they can.. maybe that is an option worth looking into? You might also check with the local chamber of commerce to see if they are aware of any assistance programs.

Regarding your doctor demanding you keep the slot.. personally I find that a little odd. All treatment options/timing ultimately are up to you. If you need to re-schedule this appointment then that should be your call. Unless there is proven evidence that doing so will make the procedure less effective (which I doubt) then waiting an additional week or two shouldn't matter. Seriously, I would question this lack of consideration for your ability to attend this appointment.

Please don't hold on to the feelings you are having about being a burden.. I'm sure we have all felt this way on/off during the course of this beast. Just keep doing what you can when you can, that is all that is all you can do. If family or friends don't understand why you aren't always able to do things like you have prior to this.. then maybe they should go with you to a pain psychologist or to your CRPS PM doctor so that they can hear it from them. This helped my husband understand better than I could ever explain. Sometimes hearing it from a professional makes it more clear to them.

I do hope tomorrow brings a smile to your face and the emotions that are eating at you today are long forgotten!

Kindly,
Tessa

Very good point, for my future appts. I am looking into that, it may get expensive but it may be worth it to save all the stress!

My husband gets angry too sometimes, with logistics caused by the RSD. I try to remember that the RSD has made his life more difficult too and he gets angry at the RSD. He probably gets mad at the RSD more than I do. I like Lit Love's idea of hiring a driver. I know that too might be a pain, but it would relieve some of the pressure between family members.

I hope it gets better, soft hugs, Syl

You can find someone to do this kind of work for $10-15 per hour. It probably is less expensive than having your hubby or son miss work. If you use an official driver it'll be more expensive. (You might want to check out if your community offers a door to door shuttle service for the disabled as well.)

I've had family help, friends help, and employed help. It can be well worth the investment to my relationships to pay for help at times. Being dependent can really effect your relationships negatively.

Also check out the bulletin board at the hospital. They might have some posting on there about people willing to help. Also at the Dr's offices. Call up to the senior centers too. I know it sounds funny, but they might have a program that drives to and from and usually not that expensive. Some places cost I think but don't quote me around $5 to 10 for a trip, week month and so on. Check through your church first though. While your getting treatment they can go get lunch or do a little shopping for things they can't get in your town. I live rural not city, couldn't stand it. So when I get back to my home I will be looking this stuff up myself. Will make it a lot easier getting back and forth to the VA in El Paso, Tx. Don't feel like you need to hold this all in either. I have gotten the same thing from my husband because he has had to take a few days off to get me to and from the drs and surgery. He gets irritated but they survive. I know you want to hide how you feel but let it out. I have my in laws back in Alamogordo and I have a few friends that can drive me but its still hard. Plus with 2 littles its going to be harder. Keep smiling.

They have a handy ride bus here where I live. They pick you up at your door, and then bring you back to your door. It even accommodates power chairs and scooters. Maybe they have something like that where you live?

It only costs $1 per ride from a city I just moved from. A neighboring city even supplies taxis, again for the $1, because they don't have enough shuttles to meet demand. They will usually require a day's scheduling notice.

They will have other picks ups and drops though, so if you're sensitive to vibration, it might not be workable.

And these are generally for seniors and the disabled.