My aching feet!!!

This month, my ankles and feet have been really bothering me. My husband asked me what it feels like and why inflammation hurts so bad. Here is what I sent him. It is the only thing that comes close to how they feel right now.

Think he understands now? One would think so but then he asked me if I would go downstairs and do his work laundry. UGH.

So now that everyone knows how I have been feeling I need advice from you fellow Rheumatoid Arthritis Disease mates out there in what types of shoes you find most comfortable! Please do not tell me to go to one of those really expensive places either!! :) Budget friendly! I am on my feet 9+ hours a day at work and on concrete floor. Needless to say it does not help my pain! I have to wear a size bigger than I used to as my feet swell and I cannot seem to find something that will help somewhat!! IDEAS?

Angry and I know it...

Angry and I know it.

They say that overcoming denial is the first step...

I AM ANGRY AND I KNOW IT. 

Whew. Glad that is done. Chronic Pain has made me into an angry person. An ugly person. A person, that I do not want to be. I have been trying to overcome the anger and sadness it brings for the last two years.

I can fake it. Most of the time. I do it for my family, for my kids, for others around me. I do not want it to affect them as it does me. I tried taking it on head first, I have tried a dozen different types of meds, infusions, vitamins and even a gluten free diet. None seem to be helping. I have tried staying positive, staying in control and it all keeps slipping.
     I don't recognize the person in the mirror. RA has changed my entire physical body. I can no longer run, jump, dance. The meds make me blow up. The prednisone has changed even the shape of my face. Worse than not recognizing the face that looks back at me is not recognizing who I am inside anymore either. I used to know who I was, where I was, where I wanted to go and how to get there.

I cannot figure out why that has changed so greatly. I feel like I do not know where to even begin anymore. Even trying to thing about what path I want to take has changed as I have to think if I can do it with the pain, the swelling and if I can do it for the next 20 years or more. I do not know how to bring it anymore.
     I used to be strong. I do not feel that way anymore. I hate not being myself. I hate that I cannot spend the whole day jam packed with fun activities for my kids and I used to do. I hate that I am not the cool mom anymore! :) When my 8 year old asks me to do something and I am in too much pain, too exhausted, the look of disappointment on his face makes me cry. The feeling I know he feels keeps me up at night just thinking of ways to overcome it. My 2 year old will tell me over and over sit mom sit. On the floor of course. I try to everyday for at least a little while. I remember when I could wrestle the best of them. I hate the battle inside. I hate the pain and being tired all the time. I hate being bitchy. I AM ANGRY AND I KNOW IT. You would be too if you were in pain 24 hours a day.

I lack support because I am not open enough with how I feel. I just keep pushing on. I keep things to myself and struggle to tell even my best friend what is going on. I do not know why. Because I do not look ill co-workers do not understand my need for a break or why I only work 8 hours a day. They lash out and make it not fun to be there. I fake it. Then remind myself they do not matter. I matter. My boys and family matter. I know I seem to vent a ton on this blog but it is the only place I can.

I need to find my path. I need to be happy.

Grabbing the Bull by the Horns...

It has been a while since my last post. I thought I would be able to write some more but between work, home, the boys and the disease the only time I have is at night when I am trying to sleep! In the last month I have tried to take back some control. Tried is the key word. I guess it is a good thing that I can try at least?

I went to the rheumatologist with a list of my things I needed to go over, things to tackle, and overall questions and concerns of what we are and are not taking care of. I felt good about it. I felt in control. The first being pain management. I hate pills. I have become a pill popping girl since diagnosis and it is still not helping. His only idea was to change to oxycontin. Which I refuse. I need to be able to work, care for my family and not be drugged up day in and out! We increased the mg of the vicodin. It still only helps to take the edge off so I can do some things. It all just hurts. I have been typing for less than 5 minutes and have already had to stop, shake the hands, and give them a rest.

I am losing the use of my hands due to the pain. That really sucks. This morning putting on my younger sons socks was a chore with my shaking hands and the pain. Silly that something that was soooo easy to do once has become something I dread.
Holding hands is a thing of the past. My son can hold my finger because holding hands which should be comforting is painful and uncomfortable for me. That sucks. I miss it! I am getting off track! Back to the Dr. Apt. where I tried to gain control!

2nd item to discuss was the prednisone. I have been on the steroid for a year. It helped greatly in the beginning. Now, not so much. So...why use it when it gives me "steroid face" moodiness, and weight gain. He decided to switch it to medrol. At first I was excited about it. Then realized it too is a steroid and will have the same effects! But, I felt good about making some changes hoping something could turn this around.

The result...apparently the prednisone was working some. The pain has gotten worse. The exhaustion has gotten worse. Little tasks wipe me out for hours. I will stick it out until the next appointment at the end of the month. Then will be switching back. Guess the good thing is I learned that it was helping some!

3rd item to go over was my depression. Yes, after a year of struggling and saying I could do this without an antidepressant saying I do not need any, I finally admitted to myself and the doctor that I did need some. He said "I think that is a good choice and I believe you do need some after all you are going through". He gave me samples of Cymbalta.

OMG OMG OMG!!! I took it for 4 horrible horrible days. I felt sooooooo bad. It gave me flu symptoms, hot and cold skin crawly feelings, dizziness, nausea, and severe diarrhea. I tried to stick it out but could not! It was too horrible! I do not know if all antidepressants are this way??  I think I will just continue to cry and try to get over the depression without meds because I do not know if I could try again. They kicked my ass.

4th Item  was just overall talk about rheumatoid arthritis disease and how it effecting my daily life, what is swollen what is not etc.... Most of my joints are swelling, we knew that. Some days different ones swell. The shoulder is always in pain. There is a small joint by my collar bone that makes my shoulder stick with every movement. I do not really use my right arm for any chores or things as I cannot lift it above about a 45 degree angle without the pain. It is weird how random yet consistent the intense pain is. The stabbing makes me feel bones I never knew were there! Very odd to wake up due to a searing pain in one lonely little toe.

5th Item was my insomnia. Those with RA know how hard it is to get proper rest. I am up all hours of the night. This makes my RA flare more, makes me think more which leads to more depression, makes me stress more, making my ra flare even more and a bunch of other things!!! It SUCKS. I just have to figure it out though. I cannot take sleeping pills as I have 2 young kids I need to be available for if there is an emergency at night. So other than cutting back caffeine, relaxing etc....I will have to suck it up.

Well that was my attempt to gain control over some aspects of my RA and to switch things around as appointment after appointment with my rheum nothing changed. To sum things up I felt great coming out of the apt. I felt like I was going in the right direction.

The whole grabbing the bull by the horns thing did not work for me this time. It pretty much ran over me. All the changes led to nothing. They actually made things worse in most of the cases. So....day by day I will have to take things and hope that some adjustments will help.

It is Winning, I am not

I learned one year ago that I have an autoimmune disease called Rheumatoid Arthritis. My immune system is attacking my own body instead of the bacterias it should. It is in a constant state of war. 

Since my body has turned on itself, I have been in constant pain and severe exhaustion. I told myself when I was diagnosed that I could be strong, and not let it effect my life. It is. No matter what I try, I feel like I am fighting the impossible.  

      I struggle to juggle my life. In fact, I have not been able too for a year. I struggle with work, my kids, my husband, housework, errands, my emotions, and my health. I work 40-47 hours a week. Currently, that wipes me out and I am barely able to  do any more. I do what I have to for my kids. Yet, even they miss me. They miss that I cannot rough house, run around, dance, sled, ski, even get on the floor and play. I am physically so exhausted I have to give myself a pep talk to move at night. I lie as still as I can because everything hurts any movement is a trial.  My husband is missing the "old" me, the one that would take care of everything, making sure it was all done and was like the energizer bunny. He misses that"his" time is gone. I hate that RA is making me exhausted, cranky, and an overall bitch. I hate that everyday I see disappointment on my families face when I am not myself, when I am in pain and exhausted and short-tempered even when trying to stay upbeat. I feel that I keep dropping the ball. 

      I read other blogs of other people with RA or other chronic illnesses and am impressed at how together they seem. At how none of them let this miserable disease interfere with their life. I have seen kids with JRA doing great. It is great to see them play and dance.  I am not sure how they do it. I try to stay positive but after 365 days of pure exhaustion and pain it is difficult. I read their articles and think, Yes I can do this. Things will get better. I am still waiting. 

      I cannot juggle. I forget things all the time now.  My life has changed. It has changed. I can no longer fight it. I am tired of pretending I can. I used to be a social girl. I loved to hang out with friends, and family. Now, I shy away from it. I know that after an hour I will feel like crap. I know that my body needs the rest in any free time I can get. I miss my friends. I miss my family. I hate that I am letting it control me. 

    I now know that currently I am letting it win, and I do not want to. I need to figure out how to gain control. How to feel like my old self, how to juggle it all better. I need to feel the sunshine again. 

I hate that I am writing this down but I needed put it somewhere other than my little locked up box. Whiny blogs are not what I had planned for this and it seems like I keep doing it. I hate being weak. 

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.