Dread

I am afraid. 

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! 

Remicade scare!

I am being reintroduced to remicade infusions for my RA. I have been on it before with no issues. Imagine my surprise today while getting the 2nd infusion, everything turned bad. Laying there doing my medication meditation (imagining it flow through me) when I heard my heart beat in my head. Weird I thought. I turned off pandora and sat up. Within 30 seconds of the first symptom I could not breathe. Something was sitting in my chest, I turned red, got hives, and felt lightheaded and like vomiting. I couldn't even call the nurse, a lady next to me started screaming at my gasping. They quickly removed the IV and have me a steroid shot and oxygen. I was freaking! It took about 30 minutes to calm down and then they were like ok let's try again....what?? Are they crazy? It was scary! 

My 4 year old is allergic to tree nuts and has had some severe reactions. I now understand the fear. OMG my heart goes out to him! I never realized the fear it brings. To not be able to get air in and think oh my gosh I will die. Poor guy!! 

So back to my appt.  :) I insisted on seeing the doctor first and he informed me it seems to happen on reintroduction more than any other time and that with the steroid I should be good to go. Trusting him I went ahead and nervously went back to the infusion room.

The restart went smoothly for about thirty minutes then I had an intense burning and itching sensation in my hands and feet. I calmly let the nurse know and she stopped the infusion and gave me another shot. Geez. I have been on many kinds of infusions, including remicade before and nothing has ever remotely happened like this. It is so confusing and scary. A 2 hour infusion turned to 5 and left me anxious and exhausted and due to the steroids will not be sleeping anytime soon! 

Have you had any reactions? How did you get over the nerves? It really is disappointing as remicade worked better for me than most. I also have been having a lot of fiber myalgia symptoms and the doc is thinking dual diseases. Great. What a day! 

Xeljanz Fail

I know I wasn't the only one that was really hoping that the new drug for RA was the miracle cure we were waiting for.  Since it is in pill form it also is soooo much easier and less painful! No more infusions and injections! Yay! 

I wish it went that well. I hope that for some it is. It was not my miracle. After 4 month on the medicine I opted out. I prayed and prayed that my pain and inflammation would decrease using it but it did not. 

I hate my body. It is such a traitor. It only got worse and I am back on the dreaded prednisone and infusions. I wait for the remicade to get in my system and hope it comes fast. I am even desperate enough to imagine it spreading through my body and being absorbed. Hey anything can help right? It might not work great but at least on the infusions I can go to sleep at night without crying. I am tired of being such a B. Yes a capital B at that. I know it, I try to stop it but I will be the not be the first one to tell you that chronic pain makes you cranky. So as I lay here imagining my meds are easing the inflammation and trying to calm myself I realize I still have hope for that miracle cure. So all you brainiacs out there keep working hard. We appreciate you and are hoping you are successful! 

Letting go

I need to surrender my worries and trust that there is a plan. 

As I lay here

As I lay here in bed at 4 pm due to pain I reflect. Afternoon thunderstorms used to be my favorite. I loved the sound of thunder, the smell of rain and the calmness it brings. Now, those storms bring pain and frustration. The day can be going well but as the weather shift so does my fatigue and pain. I end up in bed. Praying for relief, for healing and peace. 

As I lay here in bed, my 4 year old is rejoicing. He has his stool out and has been trying to get things in the desk that he cannot reach, nor will I let him. I tell him no and I get his devilish grin. He stops, takes his stool to the bookshelves, also in my room gives me the grin and says "don't look mom, close your eyes and rest" I pretend to and see him once again going for something he doesn't need. As I lay here catching him I think about what he is feeling. The freedom he probably feels and pride when he reaches that big bottle of lotion. I watch him take it down without scolding and ask that he puts that lotion on my legs. He was more than happy to. 

Do, as I lay here in pain, with the storms raging, there is sunshine. He is 4. 

The ride

Ever feel like you are always on a roller coaster? Up and down, twists and turns? I find myself on a never ending ride that I can't seem to get off of! I am beat. I feel like a...I don't even know I am too tired to think. This ride is not any fun. 

A hurting girls words

I know when I was diagnosed I looked everywhere I could to find out how people with RA lived. How they felt about having the disease, how it affects relationships and their old lives. It is hard to come across things. A lot of people have awesome blogs about research, and the disease. There are some about every day lives, how positive people can be, they might be. I try to be positive. It is hard. RA effects  people differently. However, we all live in pain. If you don't want to hear the bad sides, don't read on. I plan on giving some really raw opinions on my life and RA.

Above all, RA sucks. It sucks bad. There is no way anyone could tell me different. Yes, somedays are better but even good days end with pain. 

Second, say goodbye to the old you. No matter how hard I try, I cannot do the things I did before. I cannot be the person I was before. Not physically or mentally. 

Before, I was optimistic, outgoing and a very busy person who did not slow down. Now, I am not optimistic. There were days I would be; only to get slapped down with a flare lasting months. I am an introvert as I don't get out much because of the pain. When I do I am miserable and not myself. Not only did I have to slow down I had to dead stop. The last few months I have been in a horrible flare. Somedays I cannot move my fingers or wrists. Somedays it is my shoulders and knees. Never relief. In the last week I have driven once, been out of the house twice and wanted to stay in bed because of the pain everyday. I get up only for my kids. 

I used to be a super mom. Now, before my three year old jumps on me, climbs in my lap or wants picked up I have to say that I can't. I have to ask him not to touch me. It hurts. Both the touching and the look in his face. I cannot get this time back. I used to look forward to outings, to doing things to make my kids smile, now I Dread them. I do them as much as I can but know I will be paying for it. I have to try though. I cannot bear to hear my kids tell their dad "mommy doesn't like me anymore,she won't hold me or play." 

Lets look back...RA sucks, you will not be you anymore, you will feel guilty, your attitude changes and much more I will get into later as my hand is cramping and I cannot write anymore. Sorry if this is too real but I wanted to get it out there. Yes it could be worse. But it still sucks. 

Up, down, up, Down

This disease is seriously driving me bonkers! It can go from feeling great to the greatest pain in the world. The last few months have been tough! I was allowed to try Methotrexate which when added to my infusions has been known to help immensely, however, my body betrayed me again. After taking it one time my Liver enzymes jump to tens times the normal. So.... Was quickly taken off. 

     About two weeks after my infusion the pain started. It was severe. Some nights I would cry all night. Some days I could not walk. My fingers were not working, I couldn't straighten them or grip things. I was quickly becoming less independent and had to teach my ten year old how to pull my hair in a ponytail. Laundry piled up and then I lost someone close to me from cancer. The stress only made it worse. I was due in for an infusion and explained about my pain. They increased my dose and have me some IV steroids. I felt great. For exactly two weeks I could do things and not worry about how it was going to effect me later. 

Why must it toy with us so? Why does my body attack it self with force?? First my fingers and wrists. Next knives were attacking my shoulders and knees, and finally my ankles. The pain is like nothing I have felt. It is much worse than normal. I can dope myself up and make it through a few hours a day but pay for it later. After the funeral I literally could not move anything. In tears all night I was ready to go to the ER. The only reason I didn't was I didn't want to wake the kids up. I couldn't stand, couldn't roll, just laid there on my back stuck. It was horrible. 

My heart was breaking when my 3 year old ran to his dad and said "mom doesn't like me, she won't give me a hug" oh baby how I want to. We have explained my disease but it is not easily understood to a ten year old much less my three year old. At least once a day I have to tell him, baby I cannot pick you up right now I am hurting. Somedays he goes with it someways it bothers him and we cry together. 

The pain is extreme. It is breaking me currently and need to figure out how to overcome. How to stop my body from betraying me. I want my life back. And I want it back for more than two weeks. 

The sky is blue!

As this summer races by I find myself looking for more experiences to give my boys within the limitations I can handle. I feel like I have done a good job so far. Earlier this summer we visited grandpa in Chicago. Loaded with pills including prednisone, pain pills, and more, we set off to explore the city. Man it was great, I pushed myself really hard and did it. I was dying by time evening came, laid in bed unable to move, but it was worth it. 

I find that even if it is painful to move it helps my mental health to do things. To push myself to get over the fatigue and just go. It sometimes takes some serious pep talks to myself! :) it might sound silly but I find my self inspiring. Maybe only to me but I feel like I am getting a handle on RA. That itself wants me to jump for joy. I have been in a fog and see it clearing. I am hoping it stays. 

While I still struggle with the pain and fatigue I can see a change in my mind. It's not so blue. Along with my depression easing some I have been eating healthy (as I should with diabetes) and the weight is starting to shed and my liver counts are down. Finally I can try methotrexate along with my infusions. Maybe this is the boost I need to start feeling less pain  and making it easier to get around. That is exciting! Any advice from those experienced with methotrexate?? I am nervous but hopeful. 

This post is sort of all over but I just wanted to jot things down and get it out! 

Today, the sky is blue and I plan to enjoy it. I hope you do to! Even for a walk, or just to sit, it does wonders for your mood and good for your body! 

Its OK to be not OK. Right?

Hello again! It has been a while since my last post. I have been busy with life, my boys and a lot of new illnesses!

Imagine to wake up one day with very little vision. So Scary! Standing up was an effort due to the stiff joints first thing in the morning always but add dizziness, and no vision to it and I was scared senseless. The thoughts going through my head as my day went on were insanely real. I was so petrfied and wondering if it would clear. I wanted to stare and burn the images of my boys faces in my head, each look, each emotion, an each smile. To never see them again would be a nightmare. It only got worse as the day went on.

Once it hit the afternoon I knew it was time to go to the hospital. After a few hours in the ER they transferred me to ICU where I stayed for 7 days while they tried to figure out what was wrong and to figure out why my blood sugar was so high.  The two years of prednisone has taken a toll on my body. It now is helping raise my blood sugars into the 600s. So, to make a long story short, I have developed diabetes and my meds were dangerously raising my sugars to the point of shutting down organs. They figured most things out and we are still working on some. My vision is better. Not perfect but with glasses I can see.

Two months later, sugars are good, liver still bad, have new glasses, and some other issues are in the process of progress. Most aggrevating is the pain is back and is worse than I was first diagnosed. My RAD is keeping me up, stressing me out and driving me crazy. Prednisone was the only thing that seemed to help some of the pain. To be in this much pain every day wears on my soul. Despair overtakes me. I am trying not to lose myself. I am trying not to abandon me.

I was at the infusion clinic last week and sitting next to an older woman around 75 or so. She looked at me and said, "I am glad I got RA when I was 70, I couldn't live with the pain my whole life". What do I say to that? I sort of just smiled and said "yes it's hard". She then responds "you are so young, I am sorry for you". Again, what do I say? I can appreciate that she understands the pain and can identify what I go through but want her to shush as it makes me think of the future. It makes me thing over the never ending cycles I now call my life.

I pray for peace. I pray for control. Yet,  I am angry. I know you have heard this from me before but I always seem to be. I am angry I have to go through this as a young adult. I am angry that my friends can live normal, have fun, climb mountains, ski, horseback ride, stay out dancing and overall, live. I am mourning the old me. My old body, The activities I could do, and most of all...my dreams.

I am not supposed to be angry. I am supposed to have faith and believe that it will all be ok. I feel weak. I know I am angry and try not to act on it, I do not do a very good job I guess as my 9 yo will say, "I can tell when you hurt bad because you are grumpy". I try not be but it is hard. I can be fine, and then another limitation or activity pops up that I cannot do and it starts over again. It is a vicious cycle.

I am acknowledging the anger now. I hope that the despair I have been feeling will go away with acknowledgment. I know I can overcome it, I am facing it and working on controlling it.

"A fool gives full vent to his anger, but a wise man keeps himself under control" (Proverbs 29:11).

Today's Steps

Today, I accomplished things. Today, I feel better about myself. Today, I felt like the old me for a bit. Today, I did not think about how I would feel later. Today, I took over. Today, I might not feel perfect but I made baby steps. 

I decided to live for today. I got a decent night sleep last night  and decided today to try to act like nothing was enabling me from doing things. I took my son to lunch. I volunteered at his school for 2 hours, went to the library and ran some errands. I might be exhausted now but it was worth it today. I felt good. Not physically but mentally and that means there is still sunshine! Baby steps are something! I did not feel like breaking down. Today, I felt normal. Who knows, maybe I can keep it up! The hardest part is putting it in the back of the mind and leaving it there.

 You only have one life to live and I have to give it my everything. 

Under Attack

These days it seems that not only my immune system is under attack but the rest of my body including my mind. I have struggled with pain management for a long time. As a mom, I cannot be out of it on high doses of pain meds. This makes it hard to stay on top of the pain. Currently, I am on a state health plan which does not cover my rheumatologist. Scares me. I have to find a new one and I hate that. It might be good to get a new pair of eyes and ears on it but Stressful! Just another thing to add onto this poop.

My muscles feel like I run a marathon everyday. I wish that is what I did to be in so much pain! At least then I would be in shape and feeling good! I went swimming today with the kids. By this I mean I got in the pool and stood there holding my 2 year old in the water. We were there for an hour. I feel like crying I hurt so bad. Muscles and joints I did not know I have hurt. They tire after holding anything. Or even typing as I am now is bothering my fingers, wrists, and arms. I feel it pull in my forearm and above my elbow. My dog which is under 20 pound could step on my leg and I cringe. My child can just want held in my arms and I cringe. I am under attack and am losing the battle!!!They have taken the offensive position and are attacking with force.

Of course my joints are involved. They are swollen and have knives going through them. This I know is normal for RA. I just never thought every ounce of my body would feel this way!

My emotions are under attack from all the pain. I am depressed. I get angry easy. I am frustrated. I am fed up with it all. When can I start making progress? When will the attack ease?? UGH. I need to rally. I am going to bed for the day and hope rest brings my body peace and hope I sleep. 

Some Tips...

Just a quick note as my kids are all over me this morning. I was looking back at  my posts and was surprised to see that the most viewed post is the Quest for Shampoo. This shows me that many many with RA are struggling also finding products that are easier to use! I am new to the auto-immune world and am learning day by day. Here are a few tips I have found to make my life easier! Please add! Let's get a list going!! :) We learn from eachother!



1. Ask the butcher at the meat counter to cut your meat when you purchase if you need it cut, chopped etc...

2. The big fat pump shampoo and conditioner bottles work best as you do not have to lift them! Pantene, Bed Head, Paul Mitchell have them.

3. Split your prednisone dose (ask your doctor first!!!!) My rheum told me to and at first I was against as I tended to take it too late and be in pain earlier but if you are adament on taking it at a certain time I last longer and evenings are easier if I have the 2nd half in the afternoon.

4. Rest (Of Course) Even 10 minutes of doing nothing helps me.

5. As a mom, my purse weighs a ton along with a diaper bag.  It tolls on my arm joints and is painful. I have resorted to a backpack for it all.  I might look silly but it causes me a lot less pain! I got mine at Dick Sports and it is Eagles Crest. It is one of the ones that is made for day hiking. It is small and has straps for the front if needed which takes more weight off the back. It also has good padding on the shoulders. The nice thing is my 9 year old can carry it also if I get hot or tired from carrying it.

6.  Tennis Shoes. A good pair. Basically this is all I am currently wearing. Yes I miss other shoes but tennis shoes seem to help my feet, ankles and knees. I like any of the Nike Cross Training ones.

Daily Grumblings with my struggles

I have been diagnosed for 1.5 years. I felt bad a lot longer than that! I am tough. I am a fighter. I push. I have limits though like anyone else. This post is something you might not want to read if you do not want real. This post is covering some things that I struggle with already. What I can't do, I know we are to focus on the positive but I know that I also like the real. The real of it is life does change. In addition to a lot of other things like recovery tune, more rest, meds, and moods I have struggled with things already that do make me nervous of what's to come. Here are some things I am having issues with in no particular order. If I have found an easier way to do things I listed. If you know of things to make these things easier...Help me out! :)

Writing: filling out paperwork, handwriting things is hard to do. I can manage a little but my hand starts burning after a few minutes! Frustrating! I try to ask for paperwork in advance if I know I need to do some or see if I can do it online so I can do it at my own speed.

Coloring: having 2 kids means often they shove a crayon in my hand and ask me to color with them, or draw something for them. Again holding small items like a crayon or marker brings pain! But of course I cannot say no! I do it for a few and then encourage them to do it.

Doing my hair: I have curly hair that frizzes without me doing it. If I wear it curly it is not too hard to do but if I want to straighten it, that is a whole different story! Squeezing the iron kills me! I like it straight but only manage to do it once every 3 to 4 months as it takes me hours to do it, resting my hands in between pieces! Ugh!

Holding hands: this is one of the ones that if I think about it I cry. Others I can do without but it makes me sad when I cannot hold my kids hands for more than little bit. I make sure I do for a few seconds everyday as I am sure I will not be able too one day.  I love the feel if their hands in mine. Sad.

Typing for a long period of time makes my wrists and fingers hurt. I used to be able to kick out a blog in one sitting but now have to come back to it after awhile. Not a big deal right now but in the future could be as it is part of every career and job out there!

Holding items (muscles):part of this one surprises me as I thought only my joints should hurt. I have asked my rheum doc and he says all the inflammation weakens the muscles. Holding things like my kids, dogs, purse, groceries even an umbrella make my arms ache. I picked up the coffee pot this morning and it ended up on the counter spilled with a crack in it now :(

Excercising: Now I have never been one to totally excercise, I still got some done walking, swimming, and just playing with the kids. Even walking at the zoo, or mall makes it a long recovery. If I go to the zoo today I know the next 3 or 4 days I cannot do much. I went to the mountains yesterday and could not do anything today. Frustrating! With 2 boys I need to be on the move 24 hours a day!!

Buttons: Of course. No explanation needed

Chopping: I like to cook. Food Prep is a killer! I have a processor to make things easier but if I just need one onion chopped or peppers sliced it is a ton of work to get out and clean. I have been letting my 9 year old who likes to cook use a steak knife to help me out. He enjoys feeling like a big boy using a sharp knife. (supervised of course)

Holding pots and pans is another kitchen issue! Draining things! UGH.  A pain to ask for help lifting a stupid pot to drain the grease out!!

These are just a few things that have changed. There are many more as I am sure most of you know I just am bothered by these things right now! Sort of like the shampoo!! :0 I have been exhausted this summer and very busy. Hoping things calm down soon! Day by Day!

Honored!

This last week I found out that I have been honored to become one of Heathlines Top 22 Rheumatoid Arthritis blogs in 2012.


Wow! I never thought I would be in the rankings of the other websites listed in them as I am no where near as professional (I say what I feel, I just write) They have brought me inspiration and I hope I can do the same.

As I continue to learn, I hope that others out there can use what I put out there! Also, if you have tips just comment! As a newbie I struggle still and any advice is welcomed.! There are times when I feel I need to pull back and not just let it out on here. If I did that though there would not be a point of the blog! I keep it inside everywhere else!


Thank you Healthline for honoring my blog along with the others! Everyone should check them out! I found some new blogs on there I will be bookmarking and enjoying also!!

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!!