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.