Oh, the Joy of it All

So I know it's been a while but it's been a busy time for me. I just wanted to do up a quick little post today just to let you all know I am still here. I am in a bit better shape. My pain is a little better. I'm on some crazy strong pain meds but they're doing their job for the most part.

I saw the doctor today and he is "baffled" (his words not mine) My blood work is normal (normal for me). My urine is "clean". So he has no idea what's going on. At this point I really have no idea what to think or do. I am tired of it all. Right from the start I did not for a second think it was my RA. It has just felt different to me this time. As the pain goes down thanks to the pain meds I am able to feel other things. I feel that my leg is numb and full of pins and needles, as is my foot. I also noticed that when I sit for any amount of time when I get up the leg gets some serious pins and needle action going on. From there I noticed that with prolonged walking pins and needles will return and my toes are always partially asleep. Sigh

I have no fucking clue what to think. All signs are pointing to nerve problems. the hamstring, glute and calf are doing some weird things. They seem too engage on their own. and let me tell you that is very odd, and unsettling. I have another appointment on Monday with the rheumatologist and I am hoping that he has an idea. If he doesn't then it is off to a pain specialist (thank you S for the idea). The worry is that my nerves are dying in the leg. nerve death can for sure cause the pain I am in. It can also cause all the other symptoms I am experiencing and it is very plausible because of my Ra. But at the end of the day I don't care what the problem is. Just diagnose it and make it better. I have no expectation of a cure ( there is not cure for RA) I am used to living with a condition that can not be cured. I just want to know what is going on and I want it to stop. I want to feel like I did 6 weeks ago. I think that is a reasonable request.

Oh well.

i was watching Grey's Anatomy tonight with Meaghan and at the end of the episode the 3 sexy doctors, Hunt, Sloan and Sheppard were all hitting golf balls off the roof of the hospital and Meaghan looked at me and said " Mommy i like that guy." "Which guy? " I asked " the one with the beard thingy... I like him a LOT" " SO do a lot of girls i told her. She was so enthusiastic about it I couldn't help but laugh and laugh hard. She is such a girl and the liking of Marc Sloan just showed how girlie she is and is going to be.

Meaghan had a dentist appointment today. NO CAVITIES. Dave and I are very proud of her. Meaghan does all her own brushing and flossing now. And it looks like she is doing a very good job of it. Way to go kiddo.

I am doing a project called 365. It is a photography project. Now I know I am no photographer but I am enjoying the taking of pictures everyday. Sarah got me involved in it. If you guys want to see some crazy good picture you should check out her project she is very good. She has an eye for it. I like my pictures but I have no delusions that I will ever be able to make a career out of it. Sarah on the other hand could totally make a go of it. I would pay her to take out family portraits that for sure. Here is the link to my project. Please check it out. (Sarah's is http://365project.org/joymol/365 ) and well worth the checking it out
http://365project.org/joymol/365

I think that is it for tonight. I have a little work to do on my latest project. I am making hand made beads for jewelry. And not to toot my own horn I think they are getting very good. I will post some pics of what I have made so far with my next post. I am enjoying doing it and it keeps me busy in the evenings.

Night night to everyone

Later Gaters

As I am sure u all know, I have been going through hell the last few weeks. I am still struggling but today my doctor adjusted my meds again and I must say I have some relief. So here is my post for the day.


An Ode to Oxy

the title itself makes me feel like an addict
or maybe more that I'm just a schmadict.
A schmadict you say? OH what could that be?
well my good friends it is a it's a kind of a tree.

The tree I speak of is really quite fine
it lays on the couch all covered in vines.
the vines are made of something very odd
and if you look at them closely u can see them throb

So what do you ask is it that makes them throb?
well I can tell u for sure that it's not the Schmlob.
I know yes I know you not of the Schmlob
But he is a very nice creature kind of like your cat Bob.

The Schmlob is a mix of a few critters u may know
A Horse, and a dog with some sloth in his toe.
The best part of the Schmlob is not in his toe
it's in his ability to make your pain go.

Oh yes my friends as you may have guessed
the Schmlob is a friend with whom not to be messed
he is wonderful and kind in his little white vest
and his ability to make your pain fly out west

Why out west do ask on this day?
it's because that's the direction he went on his way
and with him he took my pain all away
and left me to smile and yell hooray



I know this is silly but my last few posts have been heavy so I thought an ode to Oxy with some homage to doctor Seuss was the way to go.

Later Gaters

Panic is a funny thing. I never knew what panic was till this morning. I woke up in pain like I have never felt before. I've had a baby, and 2 knee replacements but the pain this morning was like nothing I have ever felt before. For an hour and 30 min I laid on the couch desperately trying to get up so that I could get the phone to call the doctor and then my father and husband to get someone to take me to the hospital. What I didn't realize was that the pain was so bad and I was so exhausted that I was panicking. Looking back that was true. I was panicking. I have never felt that before. I was sobbing uncontrollably begging God to make the pain stop. I was bargaining with God. Asking Him what he needed from me to make it go away? With no answer coming (cause I could hear nothing but the pain) I just sobbed harder ,screamed into my hands, forced myself to accept the searing pain that was coming and get off the couch and get the phone.

I called my dad and in between tears I asked him to come to my house cause I didn't know what to do and I wanted to go to the hospital. Looking back I think now the hospital was unnecessary (maybe). Once my meds were doing their jobs (50 mg of Prednisone and a couple of morphine) I had some relief and I felt more exhausted then anything. From there I went to guilt. I felt so bad freaking out like I did. I called my dad and step mom who live in Stienbach to come into the city to get me and take me to the hospital. I'm thinking I was not thinking very clearly. After that phone call I called Dave and told him Jim was coming to take me to the hospital and was then informed by Dave that he was coming home right now. I know that I should not feel guilty like I do, but the reality of it? Guilt is how I cope. Through making myself believe that my pain is not as bad as it actually is, I am able to cope. I understand it even less then you.

I am better right now. I have spent a lot of time sleeping and laying on the couch, and I have found some semblance of relief. The key? Drugs and rest. Staying off the leg is working well (heat helps) The health links nurse told me that if my pain goes back to a 10 I need to go to the hospital right away. She said they would be able to give me a steroid drip and some heavier pain meds. So Dave and I are doing everything we can to make sure we do not have to take a trip to the emergency room. So far I have only got back up to about a 7 or so. For the most part I can deal with that. a good night sleep should work wonders except I need to wake up every couple of hours so that I don't let my pain meds wear off. Alarm clock and me are going to be very friendly tonight.

Oh well, I learned today that I have an amazing husband, daughter Dad and Step mom. Not once did they make me feel bad for wreaking their Saturday. And honestly that was the best thing they could have done for me. I can heap enough guilt on myself that on a day like today the last thing I need is knowing that I have irritated someone else. I also learned that I do have a limit. I found it today. Or I guess it found me.

Later Gaters

I am sad, sad and angry tonight.
I am exhausted.
I am depressed
and I am more then a little heartbroken.

I thought the meds were working. I honestly thought for the first time in 13 years the meds were working. I thought, no, I let myself believe that I had found relief. I was happy. I could handle the little flare ups. I had made my peace with the little pains. They are part of the disease. But I thought I honestly thought that I WAS IN REMISSION. How could I be so fucking stupid? I have been in remission twice in my life, once spontaneously when I was 12-18 then when I was pregnant with Meaghan (which I was told would happen before I got pregnant) After remission both times my Ra got severe again and spread. But this time I thought I was going into remission because of treatment, and treatment induced remission has the ability to last for a lifetime. A LIFETIME. That's the dream with a chronic illness. I was doing so good the last year and a half. But all that's changed now.


I went back to the doctor today, he looked at me for the first time ever with such sadness. I sat there crying asking him what do I do now? If the strongest meds in the RA arsenal don't work what am I supposed to do? How do I do this for another 30 years? He didn't know what to say. I don't blame him for not knowing what to say to me. The Brooke that was in his office today was not the usual one he sees. Normally I just take what he tells me and say thanks and go fill the new scrip or adjust what I am already doing. But this time I think he saw me give up.

I could handle it being bursitis, a torn hamstring, or just an injury to some random muscle. But not my RA spreading yet again. C'MON THAT IS BULLSHIT. I am taking the strongest meds they have. I am risking getting lymphoma for Christ sake just to treat my RA. But the kicker. The joint that is causing all the pain and tears is a little joint called the Sacroiliac Joint. It is located at the back of the pelvis. It is a shitty little joint. The shitty part is that I can't have the hip replaced to end the pain. The joint can't be replaced. So I just have to live with it. I am pretty tired of just living with it. Sure, I've learnt to live with it. I live with what feels like half a life. There is the life I want to live and the life I actually live. I had fooled myself the last little while into thinking that I was going to be able to live my whole life. Not just the half of it that the pain didn't effect.

I am going to see my reumatologist next week. See if he has something new up his sleeve. I keep telling myself it could be worse, But in the end if my RA doesn't kill me, my RA treatments will. My doc told me today that with this new progression I am at a higher risk for the RA to hit my heart. He figures it is now damaging my soft tissue, my tendons to be specific. So yes I am mad, I am angry and I am sad. I just don't know where to go from here.


I was happy
I had no significant pain
I was able to do what I wanted to do
Pain was not factoring into my day to day life, cause it was not there
Now?
Now I don't know.


Later Gaters

I have been a little laid up lately so I've not posted in a couple days. My doc changed my pain med last week and I have to say I am not getting any better relief. I am a little frustrated and to be perfectly honest I am a little depressed. I am used to pain but the pain I'm having right now is just too much. I need some relief. Every time I engage the hamstring it spasms. Or something. All I know is that the pain is almost too much to bear. I'm mad at myself for complaining because I am all to aware that there are people out there that are in way worse shape then I am but I need to vent. I need to get this off my chest, cause I think I'm gonna have a little breakdown over it if I don't. So please my loyal readers bear with me. The majority of my joints are doing well. My knees are pain free. The giving out that was plaguing me after my second knee replacement has stopped, and I owe that 100 percent to to my physio therapist. She has done some amazing work with me and I owe her big time (even if she does make me do football drills).

My doc changed my meds but I went back to my old anti-inflammatory after 3 days cause the new ones he put me on were crap. They were giving me no relief. My old ones are doing much better. I am going this afternoon to the doctors again. I was supposed to go next week but I called today because I am in rough shape again. I'm getting better all over relief for the new pain patch but it the break through pain that is causing me the most discomfort. I hate feeling like this. I was doing so good for so long. I would have a normal flare up of pain every once and a while (which is what most RA suffers will have to deal with for the rest of their lives) and that I can deal with. I have made my peace with my RA. I accept that I have RA that is out of control and I will always have to deal with it. SO BE IT. IT MAKES ME WHO I AM. But this new pain????? No FUCKING way. I am not taking it any longer. I demand relief. ~sigh~

But again I feel like a big baby because there are people way worse off then me. I feel like I need to suck it up but honestly I don't think I can.

Well that's it for now, I will post after I get home from the doctors and let you know what he said.

Later Gaters

Hello my readers out there in Blog world. Just thought I would do a little entry about my weekend/Monday. This weekend was good, we didn't do too much. Meaghan had dance on Saturday and they are doing a competition at the studio for the next 6 weeks. In the next 6 weeks the girls are required to wear proper ballet attire. Hair in buns (with hairnet), black or jazz blue body suit and shoes. No jewelry, no sweaters, legwarmers or any other things we parents have bought our girls to make them even cuter while they dance. So I now have to try to get Meaghan's hair into a perfect bun twice a week. For most this would be easy but I have always had short hair so I am not very good with the long hair styles. Oh well I do my best and as long as it is up (no matter how badly) she gets the credit.







Yesterday we watched the Super Bowl. We had Super Bowl foods and drinks. We made our own pretzels. We picked our team before the beginning of the game. To be truthful Dave told us who we were cheering for. So we watched the game together the 3 of us. Meaghan made a noise maker and shook it every time daddy told her to, I clapped when our team did well and yelled at the ref when bad calls were made. We had a jolly good time as a family. It was a lot of fun. Dave won $20 bucks from a bet at work. Green Bay won. To be honest I think they won only because we were cheering for them. The win had NOTHING to do with the fact that Aron Rodgers played a great F'N game or anything. I mean come on, it's not like he was injured or anything... oh wait he was. Well it's not like he lost 2 of his best receivers during the game. Oh wait he did. But still it was the Moloney family cheering that made them win. Right?

Today was a bit of a comedy of errors. I woke this morning to Meaghan coming into my room asking if it was time for school. I looked at the clock and said ... "Yes Meaghan it is time for school, however school started 90 minutes ago so I am thinking that you should just crawl into bed with me and watch some cartoons, cause we ain't going to school today." By the time I got her dressed and fed and to school she would only be there for another hour or so. So I the great mother I am decided that she needed a jammy day with mommy. So that is what we did. It was lots of fun. She played on the computer and made valentine gifts for me and Dave.


Dave was late getting home from work tonight so I had to take Meaghan to dance in the "bad"van. I got her there cold but on time. I dropped her off and ran back home to switch van's and then I went Safeway to get diner and a couple other odds and ends e needed. But the gong show of the day was the twit behind the deli counter. I ordered 2 panini's for takeout, and thee girl had to make them 3 count it 3 times. How is that possible? How can I order something and then 25 seconds later you can't make the sandwich I just ordered? I can understand if it's busy, but I was the only bloody person in the store. sigh









Oh well, all and all it was a good day. I am thinking only the dog would think it was not the best day. Meaghan decided the dog needed to dress up like a ballerina.









well that's it for today

Later Gaters