The Hummingbird

The Hummingbird is another symbol of regeneration or resurrection. Hummingbird is the creature that opens the heart. When the hurt that caused us to close our hearts gets a chance to heal, our hearts are free to open again. If we could adapt and do this we would laugh and enjoy creation, we appreciate the magic of the present moment, and the magic of being alive. We would Heal.

I have been busy with the boys this summer and have not posted in a while. I wish I would heal. I have been struggling with a lot in the last few years and hope to overcome some things this summer. Being home has put serious strain on our budget but has me feeling better and able to do more. I am worried about making sure I do enough with my boys, giving them an awesome summer even though il cannot do as much as I used too. I recently have developed serious flares in my knees making it very hard to walk. I am tired of popping pain pills that do little. I was hoping that during the summer I would feel better.

Some days I feel pretty good. So, I take the kids to the zoo. Then the next 3 days I am in so much pain I can barely make myself get up but I do. I am pretty good at faking it. I have the worst insomnia too. I hate lying in bed thinking about the pain. It bites. LOL I guess I am feeling pretty negative. I have a lot to say and catch up on but cannot seem to put it in words.  I spent the weekend house sitting at my moms. She has hummingbirds everywhere. Occasionaly they will hit the windows. They stun themselves for a few minutes and then all the sudden stand up and fly away with their little wings beating like crazy. They are amazing. They shake it off and keep going.

I thought I was ready to write. I am not. Hopefully, soon I can put into words what is going on with me. Until then day by day.

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.