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Feeling fed up and not believed Argh!

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Rheumatoid Arthritis
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Posted 3/31/2010 11:25 PM (GMT 0)
Hi all i'll try not to just ramble on too much but kinda need a rant and Am interested in others experiences of this. I was on mtx pills since aug last year. I live with my Mum and I think she thought I should just get better over night so If I ever mentioned the pain or winced etc she would tut and roll her eyes etc. Saw Rheumy end Jan and coz of pain and high CRP etc she said clearly not working so put me on injection form and gave me another depot steroid injection and put me on prednisolone. Because of one thing and another didn't start injections till 3 fridays ago. Think even though I was told to give it at lease 6wks Mum and sis thought i'd be better overnight. Soon got flare and Mum didn't seem to believe me. But the pain has been awful and swelling bad also. Pain killers not working so put on liquid Morphine. Mum questioned my need for it and sister laughed. Last fri went to dr's who put me on 12hr release morphine and liquid If needed. Took liquid at weekend and Mum had go. Pain can't be that bad and so on. Rheumy phoned today and said CRP is 38.8 so If still bad after 3more shots she'll see me back. When Mum moaned tonight about my taking some liquid morphine I told her about CRP and she kinda looked sorry but she shouldn't need that sort of proof to see/believe my pain. Also cancelled a night out with friends last fri coz of all this and re arranged for this fri and it was Only my best friend who understood. Argh! My rant's over even though it probably didn't make much sense. Thanks for reading. Abol
Posted 4/1/2010 12:31 AM (GMT 0)

Sorry you're not feeling well. It's ashame that your mom & sis feel that way.....If they could only stand in your shoes for a day or two...then that might change their train of thought? Thats very frustratingshakehead  A few of years ago when I was super super bad waiting on my meds to kick in.....I used to walk the floors in the middle of the night balling..literally! It was HORRIBLE.....My knees were so bad that I had to almost like fall down to sit on the toilet...and then when it was time to get up, I would rock and count to 3 to get the momenum to stand up again...I told my husband that I was gonna go buy one of those toilet seats that sit up higher so its easier to get on and off of....and he said with a look of disgust "Are you serious???" Like I was joking or something...and it just really pi**ed me off and I told him "You have NO FREAKIN IDEA what this feels like...I wish that you could feel the way that I do when I'm flaring....just for an hour and then ask me if I'm serious!" He was a bit speechless..so to speak. But honestly...unless they have RA...no-one really knows what its like. It aggravates me to hear some one say..."oh yeah...my brothers girlfriends nieces cousins or whoever has rheumatoid arthritis in his back" I just say..Oh really...Do they realize how silly they sound?? lol....

Sorry for rambling...I think that I just wanted to rant too....

I truly hope you start to feel better soon!!smile

Posted 4/1/2010 2:16 AM (GMT 0)
Hey ladies! I don't know why people can't believe us! I know exactly what you are going thru and there is no way we could fake looking like we do when we are in a flare. Plus I don't know about you guys but I am not one to ever ask for help- I have to be unable to do something that absolutely has to be done to ask for help. Like when I used to be stuck in my recliner chair. I was so weak from the RA eating me up I couldn't put the foot rest down. Then I didn't have the strength to push the button to make the chair recline. When I asked for help my family looked at me like I had two heads! Then they looked at each other like you do it-no you do ot- I've done enough for her already.
ms- your toilet story brought back memories LOL. I remember that too. The morning pain was so bad I took to just peeing down the drain of the shower so I didn't have to fall on the toilet and stand up again! I remember that rocking motion. In the am after spending the night in the recliner (couldn't get in the bed because all my joints froze up if I did) I had to rock for about a half hr. to get both the nerve and momentive up to stand on what felt like broken bones. Sheesh- sometimes I wish people could just experience 5 mins. of what we've been through.
Best of luck to both of you in finding your cocktail to make life livable.
Posted 4/1/2010 4:32 AM (GMT 0)
I, too, feel for you and know what you are talking about! Mslane, I remember when i asked my husband for a seat in the shower. He fought and gafawed me to no end, until I received a home depot gift certifcate one day from a friend and bought one. He now uses the seat too! However, he still just doesn't *get* it...thinks I'm lazy...it's frustrating. I knw he tries, but i know he also gets fed up with me constantly not getting things done.   So, Abol, hang in there! I know how sad and hard it is when loved ones act like that towards you. It's awful. But know you have an understanding ear here. I hope they figure out a mix of meds that will help you start feeling better. Unfortunately, many take time to build up in your system before they start working.

***

Posted 4/1/2010 10:35 AM (GMT 0)
Thanks guys! It's so good to know there's people out there who understand! I count myself lucky as I haven't had the toilet problem yet. I can Only get a bath though after a couple of days rest and if there's someone in the house to help me in and out lol. Yeah i'm sure hoping they find the right best combination of meds soon. Thanks again guys! Abol X
Posted 4/2/2010 11:44 AM (GMT 0)
Awwhhhh, i read your all the above posts and so totally KNOW exactly how you all feel.
My husband thinks I should be better "already." He rolls his eyes and just does not get it..

I had to smile with the toilet story as I know that rocking scenario well.
Getting out of bed every a.m. entails the same effort.

I have the same problem with the recliner. My husband fusses at me why I can't do it.

I actually do not take many bath as up/down too much --but I love a shower. Standing in the morning under the hot water streaming down helps me start each day, I could stay in there forever,

Yesterday, the weather was warm and lovely outside. Driving in the car I had the heat on so it could blow on my ankles/feet as it felt so good at the end of the day. I picked up my husband and he was fussing as to why I had the heat on , "on a day like today"...
When I tried to explain he just shook his head.

Saw my RA Wednesday. She was thrilled that my swelling has reduced so much after just my first shot of humira. I do feel better but I want it GONE 100%, She said it was a good sign I had such good results so soon --and was hopeful it will get better . Due for my next shot today...

it was so god to see my ankle bones again... I had forgotton what they look like the
Swolling is sooo much better. Still very tingly and achey especially at the end of day.

Oh to just stay in bed and off my feet.............dream on--- as LIfe gets in the way.. mommy, wife, work(teaching) etc... well I better get a move on.....all my roles await...

This weekend is a biggee.. EAStER, my bday and BAseball season starts with Yankees vs Red Sox...
Go Yanks!!! :)
Posted 4/6/2010 12:30 AM (GMT 0)
Hi Soverytired! I hope u enjoyed the weekend u were looking forward too? It's so encouraging to see that you are already having positive effects from Humira. My Rheumy has said If mtx injections don't prove so good for me, she will introduce a biologic too. But over here in England there are certain criteria you have to fit. I came off steroids on Tuesday last week and over the weekend my joints have swollen. Got hot and are very painful. I can hardly do anything and my Mum moaned when I said I doubt i'll be able to look after my 4yr old niece and 5month old nephew tomorrow morning and that I was gonna phone my GP first thing tomorrow. I mean what can I do, I can't practically and safely look after two small children the state i'm in, I mean I didn't even get dressed today and have been taking my liquid morphine every four hours along with the 12hr morphine. It can't carry on and she has to realise i'm not gonna get better over night with the first thing they try. . . God sorry! This has turned into a bit of a rant. I better go and stop feeling sorry for myself lol
Posted 4/6/2010 2:38 PM (GMT 0)
Yikes! You must be in some pain to be able to still speak coherently on that amount of morphine! I sure hope your doctor can figure out what to do to the remove the pain instead of making it with the drugs...

Of course you can't watch little ones in your condition!!!!!!! What is your mom thinking????

Posted 4/12/2010 4:23 AM (GMT 0)
Yikes is right, Abol! Keep us posted on your progress. You have to be alert for a 5 month old and 4 year old! I could barely brush my daughter's hair the other day.....thankfully, my kids are not in diapers anymore!

hoping some relief comes your way soon. take care.

**

Posted 4/13/2010 1:41 AM (GMT 0)
Hi guys! After my last post things just got so bad my ankles were so swollen the skin began to split on one and on the other If u touched it it left a dent. Also my hands, wrists and back have been bad. Well saw Rheumatologist today, the big wig aswell. He has put me back on steroids and given me a propper tapper off program too. He is increasing my mtx shots for 1month then up again. He also said it's time for a biologic but has to check it out because in 2007 I nearly lost my life to 2 serious brain disease but am now luckily in remission. He has to check the Biologics won't flare it up again. I sure hope not. I feel like a weight has been lifted off my shoulders as i'd been getting quite depressed. I think my Mum finally realised how bad things were when I broke down in tears over it all last week. I also took her to my Rheum apt today which I think also gave her food for thought. Thanks guys for your kind words and support over this recent difficult time. Abol XXX
Posted 4/13/2010 3:17 AM (GMT 0)
Good idea taking your mom- she may be in denial too because she is afraid. I sure hope you get some relief soon but I would really be careful with biologics if you had that brain disease. I have had only 4 Humira injections and have had 2 infections. I never used to get sick...
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