No part goes unnoticed

It's dark today. That last week before infusion tends to be. I always took for granted my body. It was just there right? Since developing RA I now appreciate each and every part. It seems that RA hits all parts so I must acknowledge them. Each joint makes itself known.

Somedays, it's my ankles, or wrists and somedays it is my pinkie toe.  Yes my little pinkie toe and it is always my hands.  Somedays it is every joint in my body and I feel it all. Some days I don't want to get up. I have to. Today I have some weird ones. This flare up keeps changing. Frustrating! The other new part if my body I discovered is the bottoms of my feet. I described it as the pads on my feet. Just below the toes it swelled up and feels like I am walking on just the pads. Totally painful, totally weird. I find myself balancing on the outside edge which then hurts my ankles. Lol. Like I said weird. My infusion tends to last almost three weeks. Then the flare up hits and I am down. 

My boys have figured out which days are the worst for me. They know when they can take advantage. Even my four year old knows. I can't blame them. I would of done the same thing when I was a kid! They gain up on me. Stinkers. However, when help is needed. My four year old is quite proud to be my official bottled water opener. His face is amazing. My 11 year old lives to cook dinner. Simple ones but that last week before my infusion it is a godsend. I am blessed. Between naughtiness and sweetness they might not understand the pain I am in but they try. 

It would be nice if there was a class geared to kids or something to tell them more. I try. However, coming from someone else might be better :) 

I know everyone preaches to stay positive and I try but sometimes you just have to be real. Sometimes you have to just rant! Thanks for listening! 

Getting the ugly out...

Having an autoimmune disease has changed me. It has made me slow down among many other things. I have lost control over what I can do and what I want to do. I have lost strength and I am not talking about physical though yes I have lost that too. I am talking about mental, emotional and spirtual strength. I am talking about what's inside. Having a chronic illness has given me the opportunity for reflection and self realization. Which I have realized I have ignored and need an overhaul. Feeding your soul is very important. It will help me feel at peace with myself. It will help me embrace life and accomplishments. Some things that I feel will help:

• writing about my experience and letting others know what I am going through is painful but helpful, it has given me an outlet to express my feelings I normally would not. It helps me release the ugliness inside
• Reading inspiring blogs and books. Hearing other's stories, feelings, and guidance I feel will help me feel not so alone
• Taking "me" time, being a mom of 2 boys leaves me very little "me" time. I need this. I will use this time to watch chickflicks, happy movies, and inspiring ones.
• Seeking help. I feel that I do need counseling to deal with the life altering changes I have been given. I need the extra support and someone to help guide me to inner peace
• I am going  to go back to church, prayer and know this will help. Even before I was sick it felt good to go. I felt better. 
• I am going to learn meditation and hopefully yoga. I need to learn how to react to stress better, to keep the poison out of me. I need to channel. I need to gain control and feel that this will bring me closer. 
• LAUGH

These are just ideas that I am implementing and hope they bring me closer to being at peace with myself and my disease. If you have any additional that you have found helpful please comment! All ideas are appreciated! Day by Day!! 

Neediness

When you become sick, you lose control of so many things in your life that used to be simple. This is frustrating and overwhelming. I was never one that needed help, support and guidance from others. I was the one people went to for these things. I am having a very hard time adjusting to being the needy one. It is the worst feeling to ask for help. It is the worst feeling to want something and not get it because it means moving. I struggle asking for help. I just keep doing things I cannot do. This gives the impression that I am fine and feeling good, even when I am not.  Then I pay for days. My body cannot do what I once did before. It seems that each day it can do less and less. This makes me more needy and Dang it, I do not want to be that person.

Recently, things happened where I was forced to ask for more help. This leaves me feeling guilty. I hate that too! :( Some people really jumped in and were a great help. Of course I appreciate every bit of help. I just don't want to feel useless. I don't want to think that I cannot do the everyday things anymore. I want to be able to do them and feel good. Or even OK. People shy away from neediness. It scares people. I am figuring out how to balance it. How to be OK with it and how to ask for help when I need it. Having an invisible illness makes it more difficult. Some people say "did you take your meds" others say "take an aspirin" or "moving will ease it" and I just have to sigh, remind myself they have no idea what I feel like and move on. It is so hard to get people to understand. Any advice?

Then I have to turn around the conversation and talk about the neediness of others. While I love to be needed I feel that some have unrealistic expectations on what I can do and what I do do.  (LOL I said do do) This leads to resentfulness which is not pretty! it adds to the ugliness I am trying to rid! I also need advice on how to handle this!

I appreciate your time and look forward to hearing your advice!

The pain has relocated....

This week I have a new "flare-zone". It is so odd how the pain relocates itself. Never giving any relief. My left knee has been giving me more and more pain everyday. Stairs are very difficult and I avoid them if I can. This is difficult in my house as there is no bathroom on the main level!!! I am finding that each different joint flare up seems to cause more and more pain. The good thing I have going right now is being off of work has rested my shoulders and they only give me difficulty if I over use them or extend too far. So that is good. Right? The non-RA bad news is being off of work puts more stress on me as we are struggling financially and medical bills along with others are adding up fast! More stress equals more pain....UGH.

It moved to my knees. Until now, they have only ached, it has been my wrists, fingers, shoulder, toes and ankles causing me pain. Now add in the knees. I do not sleep well as it is. I lie there thinking about which joint hurts more. Which one I need to avoid laying on. Which one has been the stiffest. On top of the pain, all the meds cause insomnia. There is nothing worse than being in pain and utterly exhausted and unable to sleep. My best sleep time is my one hour nap during the day. It is the only time I wake up and think "that was good sleep".  SUCKS!!!! I should be in bed now. I would except I find if I stay up as long as I possibly can I might get a few hours of sleep. The lack of sleep, the pain, the frustration makes me bitchy. I don't like to be bitchy. I like to sleep. I have added 9 new medications in the last 3 months and do not want to add a sleep aid also.

I need to feel better. I want to try meditation and yoga but both need energy and motivation. It is hard to motivate myself to do much of anything other than hang out with my boys and some days I have to force myself to do that! With the new pains in my knee, I get more scared. I am freaking out inside! I like walking. I do not want this to be the start of the end of that.  This joint is one I need to be mobile. For 2 days I have not even wanted to put any weight on it. I have, as I am not in a point in my life where I can stay in bed. I just tried to limit the amount of walking, standing, and other activities being on my feet. I cannot tell you how many times in the last 2 days I told my kids "please understand, my knee really hurts and I need to sit". My 2 year old will then check my knee out, see no band aid, kiss it and say ok all better wanna play now? Makes me smile and makes my heartbreak at the same time.
The DH seems not to understand either. I probably told him more than I told the kids and he just shrugs it off and says "its always something", or "really" come on. I am tired of trying to beg him for help. I feel that I should not have to. It makes me sad.

Like I said, I am taking some time off, hoping the new meds will be of some help and I can find some relief. I notice that it is having some positive effects. I have a little more energy. I get a small nap in. I can last longer. It has helped my feet some. They do not ache all day. Still swollen but currently not the major source of my pain. Well I need to try to go to sleep now. Just wanted to jot some things down. Until next time, I appreciate you all listening to me!!

Guilt

guilt (noun)
1. the fact or state of having committed an offense, crime,violation, or wrong, especially against moral or penal law;culpability: He admitted his guilt.

2.

a feeling of responsibility or remorse for some offense,crime, wrong, etc., whether real or imagined.

3. 

Conduct involving the commission of such crimes, wrongs, etc.: to live a life of guilt.


 Though the definition states for having committed an offense, remorse etc...through no fault of my own, I have RA. This should not be a crime, wrong, or offense. However, it feels this way.  Lately I have noticed I feel guilty all the time – guilty that I’m not able to do all the things I used to, guilty that I can’t work more, guilty that I cannot run, dance, hike, and play with my kids as I used too, guilty that having RAD has made my family sad, stressed and worried.  It makes no sense, because I didn’t decide to get sick, I am doing what I can to feel better, I am trying my hardest but I even feel guilty for having a chronic illness in the first place and causing others more stress. Guilt. I think the definition needs redefined. 

My husband also feels a lot of guilt though he does not show it all the time.  He feels guilty that he can't take better care of me. He feels guilty when I come home from work in pain because he thinks that if he made more money I wouldn’t have to work. He lashes out on me due to the extra pressure and stress my chronic illness puts on the family. End result is I lash out on him, our marriage is strained due to many things but my disease is the major one. 

My parents feel guilty, even though this is not a disease that they did something to give me. They get depressed when they cannot fix it. They struggle to speak to me about what impact it is having on my life. They feel guilty they cannot help. I feel guilty because I am not striving. I am not living up to what they feel I should be. I feel like I have failed my family. It’s a horrible feeling, knowing that MY chronic illness is making so many people feel like crap. Because it is uncomfortable to talk about, they avoid it. So then I feel more guilt taking the blame onto myself and how it is affecting me. The stress just keeps coming.  Guilt. 

The stress makes me feel worse and makes me dwell on things. I feel guilty because I am always so exhausted and cannot get anyone to understand that even if I get 8 hours of sleep, I am still exhausted. I feel guilty that even the smallest household chores leave me feeling so exhausted my symptoms get worse. 

I know the guilt is not healthy, yet I cannot stop it. I have no control over how others are feeling, so I try to make it all seem OK. I have no control over my illness and am doing what I can to feel better. Shoot, I even am eating gluten free. 

 Guilt makes me suffer more,  something that isn’t my fault, and frequently leads to self-hatred and feeling like a failure. I am not sure how to overcome the guilt. I am trying. If you have advice I will take it!  Day by Day I learn more. In learning I hope I can overcome it all. 

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.

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.

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!!!

"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.