Wednesday, January 22, 2014

More Swelling


So the external fixator was removed on Tuesday, I was so eager to have that off my finger .

At the same time it was removed I was given a nerve block to help with moving my finger. The nerve block was supposed to last. 72 hours or a good three to four days. I was so eager to have this work, no pain for three days while having Hand therapy.

It's a great theory on paper. In real life not so much.

The nerve block only lasted 7 hours not the 72 is was supposed to . Dr was astonished. 
As soon as the block wore off then came the excruciating pain.

It is so swollen I can't move it.

So all the pain from the device for nothing   If I can't move it?
Tomorrow I see he dr. again, I am taking prednisone to help with the swelling,
I sure hope that kicks in .

While bending it under the nerve block I felt and heard a snap ? Not sure if that is contributing to the swelling. 



Wednesday, January 15, 2014

Stopping Methotrexate

Well, after talking to the Rheumatologist today. I have made the decision to stop injecting Methotrexate. It completely makes me ill. I am nauseous, sick and over all wiped out. Some people would think this is completely stupid. This is the only medication I am on to control my RA.

Here is where my thinking is. I work five days a week, Saturdays and Sundays are my down days. I inject Methotrexate on Saturday night. My thinking is I will sleep through the icky parts. But lately when I wake up Sunday I am completely sick. Not just a little, but a lot. I cannot go anywhere or do anything. Sometimes by Monday I am better and off to work I go. Not anymore, now I am ill on Monday too.

I cant handle it anymore. I called the Rheumy this morning and told him, I am sick and I dont want to be. He suggested stopping and we will recheck everything in March. Who knows what will happen in March. I am done being sick, I am done being in pain, I am done.

Saturday, December 14, 2013

External Fixator

So the surgery to have my finger move due to a cat bite nine months ago, has been done. An external fixator has been applied to my finger.
Certainly not your everyday surgery. My surgeon has never put one on and said, he probably wont have to again.
Alot of risks with any surgery, infection, pins bending. The one I am worried about the most, is that this wont work at all.
It is so painful, and when the dial is turned and cranked, the pain brings me to my knees. The last time the Dr. turned it he numbed my hand so I wouldn't feel it. The major pain comes after it is cranked, its pulling my tissues, joint, tendon and ligaments apart. Even with pain meds the pain is extreme.
My reaction to the cranking is extreme swelling, the cranking should be a full turn everyday, so far in 6 days we have only gone 3/4 of a turn. He is unable to turn it quicker because of my body's reaction. So this process will take longer than expected.
Two long screws go straight threw my bone in order to hold the device on. I will post pictures when I get them of the screws.
I have made it six days so far, 7 more weeks to go!











Here is a picture of my good hand!

Tuesday, December 10, 2013

Brave

When you think of Brave what comes to mind? A policeman, firefighter, a doctor, someone in the military or even a lifeguard. certainly I would never think of myself as brave, but this is what people are saying I am.

They are saying this because of the recent surgery I just had to put on a external fixator, in efforts to get my finger to move. I don't consider myself brave for doing this, desperate is more like it. I actually consider myself more brave with dealing with Rheumatoid arthritis than this. Rheumatoid Arthritis is forever, hopefully this cat bite will end soon.

I think anyone would do the same thing as myself, given the circumstances. I am a girl I would love to have rings on my fingers again, I would love to open jars and even stick my hands in my pockets, even wear a glove. I cant do that right now. I realize my finger will never look like the other one, but functioning would be good.

I cannot describe how painful this is, there are no words to describe the pain, sometimes the pain is subtle other times intense. Often times just downright so painful I can't think. Yes, I am taking pain meds every four hours, but they just take the balling, crying and pacing pain away it doesn't stop the pain. I am used to pain after all, thats Rheumatoid Arthritis middle name, but this is different this pain is extreme.

There is a wheel on this device that needs to be turned daily. The doctor did it today in his office, I could have passed out. I  held it together despite the pain. until you have this device on your finger you will never know how much this hurts. Maybe I could be considered brave because of this device, I think anyone in my position would do the same.



Thursday, December 5, 2013

Raynauds,hand surgery and a cat bite.

So this time of year is never good in general but with someone with multiple auto immune diseases its a nightmare, especially Raynauds. 

This small event happened while I was working and not even out in the cold. .My events are getting worse the longer I have Raynauds. I used to be a lot more blue events and now we are a lot more white events. The white hurts the most, the blue is cold the most and red is the warmest.

This event really hurt and came on very suddenly. It started slowly but you can tell when it is going to be a bigger event because of how much it hurts, I think this was brought on due to stress.


I cant walk from the car to a store without my feet going completely numb. Forget that, I cant go into a food store without my feet going numb, fingers turning colors and my eyes burning. Its horrible!

The surgery to fix the finger that was bitten by the cat is on Monday.

My rheumatologist called and is concerned about the surgery the same as the GP but he is worried more about the Raynauds and the fixator and the infection rate. He doesn't know anyone that has had this device let alone someone that has Raynauds. 


There is no way I want to lose this finger because of gangrene. But I dont want to miss this opportunity to have a finger that works. For nine months my finger has not moved. I mean not even a little bit. The hand therapist and surgeon have both tried and it was the worst pain I have ever experienced. 

So now I am worried that this surgery wont happen. I am not sure about the incidence of infection. This is a new device so there is not a lot of information about it. I don't think the surgeon will know about the Raynauds, because I don't think anyone that has had Raynauds have had this device applied. I also don't think the Surgeon knows a darn thing about Rheumatoid Arthritis, Raynaud's or Sjogrens. I keep telling him to call the Rheumatologist. 

So today was frustrating, I am in limbo until I know what is going on. Man if I could turn back time the day I was bitten. The past nine months have been a living nightmare. 




Monday, November 18, 2013

Frustrated

So today I am completely frustrated. I received a call from my GP, she is concerned about the upcoming surgery. She is concerned about the potential risk of infection. The device that will be adhered to my finger is called a external fixator.


It looks completely barbaric. Scary.I never would have guessed that I cat bite nearly nine months ago, would led to me getting this device on my finger. I have just about 2 weeks to get my things in order for the holidays.

I hope my blood work doesn't stop this surgery from happening. My finger is dying, atrophying. The sooner this can take place the better for recovering a finger that works. It might seem miniscual to most that my middle finger doesn't bend, to me it is huge, massive really. I cant bear to look at it anymore, so I keep it covered pretty much all the time. Its amazing really how much you really need to have fingers that work. Opening jars, getting change from your pockets, getting something simple and small from your purse. The list is endless. I have learned to adapt and change and do things with my left hand, that I normally did with my right.

Something I miss the most, is just sitting on my hands to keep them warm. I have Raynauds, so I am constantly cold, and an easy way to keep my hands warm, is to sit on them. Impossible to do that now.

I also love to crochet, takes my mind off of things and I can make treasures for my friends. I have adapted to do this without my middle finger as well. Its hard, but I was determined to make it work.

My hopes and dreams is that this surgery works and I am able to have a functional finger. It might not look good, but if it works that is all I want.

I have gone almost the whole time without my regular dose of RA meds. This Wednesday I will get a test to see how active my RA is. Its a blood test and they are coming to my house to give it to me.

I don't think I need a blood test to tell, I wake up everyday stiffer than the day before, I can sit for long without being stiff when trying to move. My Rheumatologist insisted this be done before surgery.

So now its just a waiting game until the actual day comes. It is going to hurt, it is going to be scary, it will test my every strength. But worth it in the end hopefully.

Saturday, October 12, 2013

Feeling

So today I thought I would write about how I feel. I can tell people that I feel awful, but I am not sure that is a clear description of how I feel. Someone with numerous auto immune diseases have a wide variety of different symptoms. Mine have a wide range on any given day!

I wake up everyday with my hands hurting so bad and stiff. When I say they are stiff, it means that when I wake up I cant make a fist or even bend my fingers and toes. People with RA usually describe it is like feeling dead. Most night I wake up between 3-4 because this hand pain and often knee pain, hurts so bad I cant sleep.

Taking a hot shower as I do every morning often helps them feel better, but everyday is different and it might be until noon or longer before my hands stop hurting. If I sit in a position for more than 10 minutes, my body freezes up again. I am unable to move,  just like in the morning.

I ran a few errands earlier as many people do on the weekends. My first stop I was ok, accomplished what I needed. I figured I would continue onto the next errands. I got there and felt like just sitting in the car. My hands hurt, my legs hurt and was exhausted. I came home and took a nap on the sofa. My hands are hurting the most. I feel like I have the flu, I feel icky, weird almost like a headache is coming on and never does.

I am still having photo sensitivity at most stores I go into. So my eyes will hurt, like they are in fire and they are watery but they are not they are actually super dry. My skin is now peeling because I am so dry from the Sjogrens.

It is starting to get colder alot more, so my Raynauds is in full force. I wear a coat inside my house. And the warm and snugly Uggs a friend gave me. She has no idea what that simple jester has meant to someone with Raynauds. I am constantly cold, and its not just finger and toes, its an all over freezing cold.

My RA is constantly giving me troubles. I am still on a low dose of Methotrexate, because of the surgery I have had and the upcoming surgery. So it seems like it will be a while before I am able to go back on a normal dose and my infusions. Vicodin takes the edge off, but doesn't stop it.

Since the surgery nearly a month ago, all of my diseases have been over active. One in particular has been a huge issue. It is not an auto immune disease but usually accompanies people who have auto immune diseases is Fibromyalgia. I don't talk about this much, but recently my legs hurt so bad, how can I not. The muscles in my legs feel like I have ran a marathon, but literally I haven't gotten off the sofa. Even one of my dogs or cats sitting on my lap is so painful. I believe it was all set off by the surgery.

So looking ahead, I have to have bloodwork done, I also have an appointment on Thursday at John Hopkins University, a hand surgeon appointment at the end of October to find out when the next surgery will be. And in November a Rheumatologist and GP appointments on the same day. It seems like I am always going to a doctors appt. But trust me I don't want to go to any.