The Grinch Got Me

It is 3 nights before Christmas. I have 2 young boys who will be anxiously creeping down the stairs to see what Santa has brought them in a few days and unless I get my act together and get some energy going they will be most disappointed. The Grinch got me this year. The Grinch this year is my RA.

I first noticed a change when the tree was going up and I could not finish. This is not normal for me. Normally , I am the one to do all the decorating. The tree, the house, and this year I stopped after one tote of ornaments was done. Even most of what got on the tree my 8yo son did. I just helped unwrap. Using the excuse of my 18mo youngest son I said we should not put the breakable ones up. I was just to tired and sore.

The next night my older son was asking about the singing animals, pictures, candles and other funny Christmas cheer I spread throughout my house without fail every year. The Grinch got them this year. I could not do it. It is three days before Christmas and I still have to find which tote the stockings are in as they are still in the garage somewhere.

For days the kids were begging to put lights up, put out the deer, sleigh and inflatables. I could not let them down. With the help from my mom, we managed to get two strands wrapped around the porch rail. Not the glorious display we normally have but enough to make my son smile.

Today, we  tried to make cookies. Normally I make tons and tons of cookies of all kinds to give out, munch on, and make everyone happy. I could only get one batch of sugar cookies done. As my son was decorating, instead of sitting by him and decorating with him I had to lay on the couch. Every year we make homemade ornaments to give to all my family. Needless to say this year I did not even buy any supplies. My hands cannot take it.

People invite me out. Family is getting together and I am sitting here thinking how hard this is going to be.  I never thought that the Grinch would get me. I never imagined what RA would do to change my life. I never knew that every night I lay in pain I would lose more of me. There is nothing worse than knowing just how often I disappoint my kids when I cannot do the things I could. I know that I am supposed to think positively and I do try. Its just that it is too much right now. The Grinch got a hold of me and I cannot shake him off. I hope someday my Christmas traditions come back. I hope someday I can play ring around the roses with my son and fall to the ground in laughter. For now, I will get through it. I will do what needs to get done, just not a lot more.

60-Second Guide to Rheumatoid Arthritis

This is a great short easy to read gudie to Rheumatoid Arthritis.

Reading this to my 8 year old helps him understand why I can't do all the things I once could.

60-Second Guide to Rheumatoid Arthritis

Quest for Shampoo....

I am on a quest. It is most serious. I must find a shampoo and conditioner bottle that I can easily squeeze in the morning. Impossible? I will find out!

Winter makes my bones scream, more so than normal. Every day things are so tough! Recently, I am finding that winter morning stiffness is a whole different ballgame.

I must find ways to make life easier! After talking myself out of bed, I head to the shower. Once under the hot steamy shower I think ahhhhhh that feels good. Then I go to pick up the shampoo...I drop it...more than once. Now I have to bend down and pick it up! AGH! My hands are stiff, my fingers hurt. Once I do have a good grip I try to squeeze...and squeeze....and squeeze. Ummmmm, it takes me about 8 squeezes with little breaks in between to get the amount needed!!

Now to get it up and into my hair since currently I cannot reach above shoulder level! Then to start over again with the much tougher bottle of conditioner. So much for my feel good hot shower. I am now aggrevated, near tears and just want to go back to bed.

I have tried numerous different types of shampoo/conditioner. Some are better than others but I still must find one that does not make me cry in the morning. I know this seems stupid but if you were in the situation you too would like to find something that helps your shower go smoother. I did try the salon spout ones. These you do not have to squeeze but you have to pump it up and down a ton to get the right amount and that is just as painful! Tear-free Shampoo takes a different meaning for those with RA. I just want to find one that is easy to use, does not hurt to squeeze, does not slip, does not require a pep talk to myself about how I can do it,  and does not bring tears to my eyes!!!

IS THERE SUCH THING???

My quest is to find it. Along the way I will share tidbits of what I find that makes my life easier. As that is what living with a chronic illness makes me look for. If you have advice feel free to comment! I was diagnosed less than a year ago and struggle with day by day things. I am off to work. Day by Day.

Fuzzy Socks and other Silly things I am Thankful for

I might have a debilitating chronic pain disease that makes it hard to get up each day, but I am thankful that I do not have a terminal illness. I struggle day by day trying to overcome pain and depression. I have learned in the last week what I have to be thankful for. I am trying to take a light side today so...

Of course I am thankful for my family, and all the usual but we never talk about the little things. The pain I have makes me thankful for things I never thought of being thankful for. Here are a few things that to you might just be something that is there. For me...they make it easier....

Silly things I recently have discovered I am thankful for:

• Bannisters 
• Jar Openers
• Slip on Shoes
• Kids clothes without  buttons
• Wrist Splints
• Warm Fuzzy Socks
• Mittens
• Heating Pads/Blankets
• Large button calculators
• comfortable and tall bed
• Remotes
• Blogging
• hearing my boys laugh

Just a few things today that make my life easier. I enjoy reading and commenting on other RA blogs. It makes me feel good that I can relate with others. I have a ton to be thankful for and hope that you realize too what you have to be thankful for!!!

My love/hate relationship with prednisone

Warning: Personal Feelings and Taboo topics discussed!
For those that are reading and unfamiliar with the drug Prednisone is in a class of drugs called corticosteroids. Prednisone prevents the release of substances in the body that cause inflammation. 


Everyone has different side effects from Prednisone but some are widespread. I suffer from weightgain, crabbiness, loss of interest in sex, and depression. I am struggling with the pros and cons of Prednisone. I have been on it for 10 months now. Before taking prednisone I could barely function. Anything I had to do I had to talk myself into doing. I put on a front on how I felt knowing that I had to be there for my family. When I got diagnosed with RA, my rheumy put me on prednisone. I felt relief for the first time in a while for most of the day. It seemed to wear off around 3. So we increased it. At the time, I was excited that I felt the relief. We thought I would be off it by summer. I was not, and am not still. After trying 4 different meds we still struggle to find the one that works for me. Without Prednisone I cannot do much. Even with it I am limited. So...PRO #1 relief. 


They say long-term use of high prednisone doses can lead to symptoms such as thinning skin, easy bruising, changes in the shape or location of body fat (especially in your face, neck, back, and waist), increased acne or facial hair, menstrual problems, impotence, or loss of interest in sex.


MY CON#1 weight gain. As they state "especially in your face, neck, back, and waist" where else??LOL. In the last 10 months I have put on 50 pounds. WAY TOO MUCH. However, as you know, do not have the energy to do much other than work and care for my boys. Also in too much pain to exercise. I look in the mirror and do not recognize myself. I hate that I do not have the strength right now to do anything about it. The "moon face" look has friends, acquaintances, and family looking at me and I am sure whispering behind my back. Other than family and a few close friends I have not told people about my disease. So they all probably are thinking "man is she letting herself go"! I feel myself overeating and man does prednisone make me hungry and thirsty! 


MY CON #2 are things most will not want to hear about so I will just say that yes I had menstrual problems. 


MY CON #3 "loss of interest in sex" this really could be from multiple things so I am not sure I can blame the prednisone solely on this. I am in pain and over exhausted so that too contributes to this. Along with stress, depression and an nonsupporting partner. All wrapped up leads to a big CON as my marriage is failing and this is one reason why. 


MY CON #4 Crabbiness, Bitchiness, Ugliness, however you would like to put it. I am not myself. I am crabby. I am tired. I normally am a pleasant optimistic person to be around but am now the opposite. My husband wonders why I snap at him, my older son who used to think I was the nice parent now snuggles with dad at night so I don't snap at him about holding still, hurting my arms, etc....Feeling ignored and unloved (which I know i am not) I lash out more. I am not this person. I am nice! I promise! I have gotten better at giving myself a time out and calming myself down after 10 months of it but it still flares!


So...to wrap it up we have 1 Pro and 4 Cons so far. There are many more and I could go on forever but looking at this list I know my answer. 


The thing is the 1 PRO is relief. I like to feel good. I like to feel like I used to. I like to feel somewhat normal. So if being bitchy and fat is what I have to do to feel good and get through the day then I have to deal with it as I can. 


Bottom line...it works. I hope that I can find another medicine that works as well as it does and can go off but until then, I will try not to be too mean and too fat. 

"LIFESTYLE MODIFICATION"

"LIFESTYLE MODIFICATIONS" 


This is what they say I need to do to feel more comfortable. I have a few problems with this as it does not fit in with my family and life as it is. 


"Gentle" exercise: My energy has been zapped by my evil archenemy "RA" it leaves no room for "gentle" exercise. Also, I have 2 boys and "gentle" is not in their vocabulary. My one year old wears me out fast. Chasing him is enough to make me cry (and laugh because he is a joy).


"Rest as needed" again this is something that is hard to modify. I work 47 hours a week, sometimes more. I need a job to keep a roof over my families head. Work does not allow me to "rest as needed". Neither does my husband or kids. They cannot comprehend the need for Supermom needing help all the sudden.


"Pace yourself" Don't try to do it all! LOL! I have to do it or no one else will.  I do not have time to "Pace Myself" or I will not do it. 


"Reduce Stress" Really? I wish. Everyday is a trial. Everyday is another stress. Reducing stress? I try to breathe, I try to think is this going to matter tomorrow? Is this worth feeling this way? 
My Pain brings more stress!!! 


"Sleep" Well I try and try and try to get enough sleep and I can't. I toss and turn as after a short period on my left side I have to flip to my right, as I flip my knee or shoulder catches bringing more pain. Then I start thinking what I need to get done the next day, decide when it would be best to do things as some are easier at different times of the day. Then I lay there thinking about this thing that is taking my life over. And well lets just say Slumber land does not come easy. 


I am sure that all these would help. Yes I am not debating that. It is just that most of these take a lot more energy than I have or are not possible in my life currently. 




Bottom line...I get out of bed everyday in pain, tired, and hoping to get through the day without everyone noticing that I am miserable. I do this for my boys. Currently. I would do anything for my kids and if fighting my own body to get out of bed each day is what I need to do I will. I only can hope that someday I will do it for myself too. That I will not feel the need to wallow in it. That I will be able to once again jump out of bed and think Today will be great!




So until I can figure out a way to make these "modifications" happen I will continue to make the changes I can and hope that one day I can do more. 

New Meds, New Pains, New Struggles and Same OLD Grumpiness!!

Started a new infusion drug last week. Decided to go with Actemra. Hoping this one helps more! So far I have not been able to cut back on the prednisone but a trying to stay positive that it will work!!

New symptoms and pains pop up at every corner. When do they stop? New Pains this month include my shoulder popping out of socket whenever I reach, or stretch with my right arm. Which is frequent! Every time I pick up my son, every time I grab a bottle, even picking up something small, it pops. Then it is excruciating pain! It works its way back in but is constantly sore and I can not lay on it or move it much! I mentioned it to the rheum doc and his reply was "oh it is probably just your RA, if you want I can give you a cortisone shot" Really, more shots???   Crap!! Any feelings out there on this? Is this something that will go away once my RA is under control? Does RA ever get under control?? Each time I have infusion I am the youngest one in the room. I always am next to a chatty older lady who tells me that she has been on her meds for 6 years and is loving it. I hope I get that way! I guess once you get over all the anger, and confusion you can be more optimistic. I hope I get to that point soon! I was always the optimistic person. That has changed and I hate it.

Prednisone continues to help me move, and help me gain weight! I have never been so hungry. Not even when I was pregnant! It also is putting white bumps (maybe calcium deposits) on my skin. My hands, back and shins are the worst. Most you cannot see but if you run your hand over them it feels like sandpaper. My husband will not rub my back saying it is disgusting. That does not make me feel so hot. I didn't ask for this and am trying to survive and live day by day and hopefully one day can once again feel good, want to laugh and dance. I have lost my fun. RA SUCKS. I am too tired to attempt fun.

I am starting to feel like even if I do start to feel relief something new will just come to the forefront. In the last month I have been struggling with support, depression, pain, understanding and much more. I am sure all you out there have been on that page before or are currently. Any Advice??

Somethings I have been struggling is sharing my difficulties with my family and friends. I don't know how to answer "How are you feeling" It also feels like some close loved ones just ignore it, I have even noticed it is a topic they steer away from, or even have stopped calling. I am not sure how to fix things. I also need to talk to my 8 year old about the disease and am unsure what he can understand and what is too overwhelming. I hate missing out on running around with him, wrestling with my boys, going on walks, skipping, dancing, and goofing off. He needs to know I want to. He needs to know that I love him and the things I stopped doing are not because of him. I do not want to always have to say...I don't feel well baby" I don't want to be the boring parent!! :) I am supposed to be the fun one!


I struggle with my feelings and depression. I probably should see a therapist about the feelings and anger I have about the disease and how it is changing my life so much. I probably should get on an anti-depressant but dang, I am on soooooo many meds I do not want to add more! I also already have medical bills adding up and do not need to keep adding more! However, my family is struggling. My marriage is struggling. I do not know if it is because I am not the same person anymore. If it is because I was the strong one and am now wavering. If it is because I am a grump?? Or is it things that have nothing to do with my RA? It is hard on us all.

Staying positive in all my grumpiness is not an easy task! All I can do is go day by day. Hug my boys while I still can no matter how it hurts. Watch them smile, laugh and grow. Learn more and Live more. Once I find a new job with less hours I would like to find a support group or even just visit the arthritis foundation in Denver. Meet more people like me and hopefully find a medicine that works! I hear so many stories of kids with JRA and remind myself how hard that has to be and to take their strength and positive energy and use it, learn from it and hope that I will!

In the meantime, I will continue to try to focus on staying positive, understanding the disease, figure out how to share with my family, and hopefully get back on track!