Suggestion Box

The journey of becoming a pregnant is beginning to ware on me...

I have been off my medications for about 5 months now. Although I do still have a lot of mobility, I am finding myself more fatigued. It's kind of hard to explain my emotion, I'll give it the 'ol college try!

I think many people will be surprised to read that I am not stressed that I am not pregnant. It would be great and that is the goal, but I do think that it will happen when it happens. I am getting annoyed of being tired and fatigued! I can feel my body craving medicine but I can't give into it even though I would love an injection of Humeria. To help curve the pain I am currently on prednisone and it is helping me get by. I'm ok with my currently dosage, however, I do NOT want to increase my dosage of prednison. (If you're someone who's been on it, you understand why...)

As I am writing this I am realizing that I am stressed, but not geared towards becoming pregnant but geared towards the physical state my body is feeling. So where do I go from here... I guess my plan is to remain positive and to be active. Which brings me to my next thought.

Exercise is a great way to relief stress and it helps me relief stress. I do it as often as I can but I need to find another outlet, I can't exercise everyday, and that's ok. So what can take it's place... shopping perhaps? I don't think my husband will like that idea, so I am open to suggestions!

Arthritis Walk

  About two weeks ago was the Arthritis Walk! It was a chilly day for a walk but many people gathered together and walked in support. And the Cedar Rapids/Iowa City Chapter raised over $40k! I hope my friends and family know how much I appreciate them walking, donating, and just being there. I don’t think they realize how helpful it is to me, knowing that I have them there with me. (Wow, I’m so lucky!)



My husband and myself have been volunteers for about three years now. He does so much to help the foundation and really does go above and beyond a typical "volunteer," he's amazing! I always go through different emotions with it. The first year it took me a good 2 1/2 hours to gain the courage to put on my blue hat, which represents, me as a person living with Arthritis. Once it was on I was still uncomfortable for some time. It's hard owning your own skin and being ok with it, especially because I'll never be ok with it. I have accepted it, but I'm still not ok with it. Then the second year it took less time to get that hat on, and this year...it was on before I left the house. Can anyone else relate to this emotion...I'm having a hard time putting it into words...


Well...I have been off my meds for over three months now and overall I have been feeling pretty strong! I'm taking prednisone to help control the pain and it seems to be doing its job. The days I feel strong I take total advantage of it! If my ankles and wrist feel good, you'll find me on my bike or out on a walk. I love those days. You never know how long those good days will last so it is so important to take full advantage of them and not fear how you will feel tomorrow.


I hope everyone is feeling great and is enjoying the spring weather :)

Vunerablity

Over these last few months I have been vulnerable in ways I thought wasn't possible for a person like me. I'll paint a picture for those who don't know me outside of my blog...



I like to be in control, I strive to always look the part, and "appearing" well put together is a must. Never did I want people to be able to see my pain just by looking at me, rather, I wanted them to see me and say, "she must have no worries." It was a perception I was creating, which was ultimately hurting me and distancing me from my friends and family. I feel that I was hindering the positive affect I could create just by allowing people in.


My husband feels that ever since I started this blog I have become more carefree and stronger. I think there is something to be said about that. Flare-ups can be caused by stress; I've been carrying this heavy chronic disease on my shoulders, never asking for help, not evening talking about it and all that it was doing was hurting myself even more. I can't believe the response I've received from being vulnerable. Thank you for accepting me and allowing me to have a safe place to express myself.


My friends have been amazing. I can't believe I kept them in the dark for so many years. I have to admit a few things... writing about the struggle is much easier than talking about it. When I talk about it, my face and neck get red and I can feel myself appearing to look embarrassed! My friends are ALWAYS wanting to help me by holding my bags, offering to open my juice, demanding I have the nicest place to sleep (I hope they know they are creating a diva!) - just kidding. I do sometimes feel silly when they do things for me, but I know that's their way of showing how much they care, and I love them for it!

Definition of "Pain"

Pain (pn)

n.
1. An unpleasant sensation occurring in varying degrees of severity as a consequence of injury, disease, or emotional disorder.
2. Suffering or distress.
3. pains The pangs of childbirth.
4. pains Great care or effort: take pains with one's work.
Synonyms: pain, ache, pang, smart, stitch, throe, twinge
These nouns denote a sensation of severe physical discomfort: abdominal pain; aches in my leg; the pangs of a cramped muscle; aspirin that alleviated the smart; a stitch in my side; the throes of dying; a twinge of arthritis. Definition provided by; www.thefreedictionary.com/pain

Arthritis is in with the definition of "pain." Yet why do I feel that because I don't have phyical deformaties, people over look just how painful arthrtitis really is. It's a challenge. When people ask me "so, what does it feel like..." I don't always respond honestly. Why?

1. The person won't believe me anyways so I say..."it sucks but most days I feel fine, I can deal with it." I can read their face, and their face is saying, there is no way it is that bad, you must not have a high tolerence for pain. I hate that I cave and that I'm not honest but it annoys me even more that when they ask that question they already have their mind made up on the issue.

2. When a sincere person asks, I am much more truthful and I use examples. "It's very painful, I have a hard time squeezing the hair gel out of the tube, I have to use my knees, and I can't walk Kaia (my black lab) alone most days because I can't grasp her leash, and some days walking bare foot isn't even an option."

3. What I want to say is..."it F-ing Sucks! Every morning you wake up feeling anxious, not knowing what the day will be like, what limitations you may have today." What I want to say is, "Some days you'll be feeling so fine you'll forget that you have RA then in the middle of the day a flare up comes and spoils it all!" What I want to say is..."The pain can be so strong that the only way I can discribe the pain is by the tears coming down my face."

But, we never really say what we are feeling now do we. The truth hurts, that's why we lie.

How Well Do I Know My Body?

One of my favorite things to do is run. When I run on a track I get very competitive with myself, when I run on the street I enjoy the sounds of my feet and the surroundings, when I run in the rain, I run with my heart. I just love it. It is so much more to me than just exercising and "clearing my head" I can't explain it.
My brother and my husband understood what running meant to me. After being diagnosed with RA and being stripped of all my passions, they knew what to do for me, run. They have become runners. Both of them are athletic, however neither were runners. This is the point I am trying it get a crossed to others (without RA or illness); take care of your body, nurture it, use it, love it! Because when it's gone, life gets hard. If you have a mobile body USE IT! There is nothing more annoying to me than seeing healthy people sitting on their butts and wasting a perfectly healthy body, I would do ANYTHING to feel healthy and strong again. What my brother and husband have done has really touched me; it showed how much they cared and how aware they were of how I felt.

Today I face a struggle, how well do I know my body...

The weather is getting nice out and I am getting the itch to run again. I go on walks about 3 to 4 times a week but I want to run. The other day my dog and I were on a walk and we came to a place where we were alone on a road and I thought, "well here goes nothing." And we jogged, I could feel myself being stiff and scared, I ran about 1/2 mile. It felt good, don't get me wrong, but I am not yet convinced that I can run. It is so very scary to me. I don't want to get me hopes up, remind myself how much I love this sport only to find the next day I have extreme flare ups and I can't walk (once again). So I'm stuck on a teeter.

I have to try to run again. Wish me luck.

Which Hand am I?

I have been off my meds for 1 month and 6 days, Wha whoo! Getting closer to the third month mark. During that time I have had a few rough days and mornings. But the biggest problem I am having is my left wrist, still! I am left-handed so I am constantly over using it, causing it to flare. I am making a conscious decision to try and use my right hand more and more. It feels odd but I hope it will give my left wrist some relief. However I would much rather have my wrist act up over my feet. Not being able to walk is much worse and I feel it causes so much more emotional and physical pain. Knowing what it feels like to not to be able to walk, reminds me that I have little to complain about.



It’s a short entry today, but more is to come…

Saying NO, is easier said than Done!

I love kids, I love acting like a kid. My nieces, nephews, and cousin’s are a BIG part of my life. Over the weekend it was my nieces 6th birthday party held at a gym. With 15 six year olds running around things got wild! My sister asked me if I would conduct some games for them. So we did, Simon says, red light green light, and tunnel tag. It was a blast and I surprised myself with how mobile I was! I made sure I was doing activities than mainly involved my feet, not my wrist.


As the evening died down, so did the kids. Then it was "hold me." I hate when my nieces and nephews ask me that :( I want to pick them up and squeeze them tight, but I can't without inflicting pain. If I start by kneeling on the floor and wrap my arms around them, then I can pick them up. However, if I'm standing and I have to lift them up--no way. When I have to say "no, I'm sorry I can't," the kids are only disappointed for a second, and their off to a new idea! But for me...it makes me feel bad. Some times I cave, and say "sure I'll hold you!" Like I did yesterday, and today I'm left with a flared up left wrist. I'll be wearing my wrist wraps all day today.

Cup of Joe, No More!

Like most people, you wake up and go downstairs to fetch a cup of coffee. It's hot, good, and it gets you moving! I love coffee; dark and black is the way I like it. One cup while I'm getting ready, another with breakfast, and a mug to go! But I am said to say my morning cups of coffee are no more.


The pads of the feet and toes are my biggest problem area. I have developed erosion in them and they are very sensitive. Every winter my toes get really cold, very purple and flare up. The flare ups causes my toes to rub up against each other causing them to blister and form what looks like blood clots. Very painful.

I had an appointment with my doctor, Dr. Brooks and I decided to showed him my toes. He looked at them and said, "Stop drinking coffee!" I was like that's it, stop drinking coffee?! My toes already have poor circulation and the caffeine was only making it worse, causing what little blood that does goes into the toes, not always to find a way out.

So I removed coffee and caffeine from my diet, and WOW! Immediate response, my toes aren't purple anymore, yippy! The blood is flowing again and the blisters and tough skin are beginning to fade. I have not had any problems giving up coffee because of the way I feel with out it. Healthy toes have out weighed my old love for coffee.

Getting Better!

Losing My Independence

Growing up I was very independent. I knew what I wanted and I had the drive to accomplish it. It's a great feeling knowing that you are all you need. My RA has really hindered that feeling that I once had and craved. I understand that I will need assistances at times, and I'm ok with that (now). But finding the balance and knowing that I am still independent has been a struggle.

Don't get me wrong, I love my husband but something he does too much for me. When I ask him to let me do things on my own he gets it and sits back. But then I become lazy and ask for his help, where did my drive go!? Augh!

Doing little things around that house makes me feel so good, like I am a contributing wife and that I can provide for others and myself. Then after I do them I am proud of myself, as soon as my husband gets home I'm sure to tell him what I did--dorky I know! Still I feel that it's not enough.

It's hard losing your self unexpectedly. My favorite past time hobby is gone, the place I go to find strength is gone, where I once thrived with confidence is gone, where does that leave me? I've got to find a way to get my spunk back!

Going off all Meds

I was encouraged to write this blog to help others whom are going through the same situation that I am. I also wanted to create a place where I can express myself and how my chronic disease affects me. I hope you enjoy what I have to say, please feel free to leave comments.

It's official; I have been off all my meds for 12 days! I was taking a Humeria shot every week along with methotrexate and a regular painkiller twice a day. I am so nervous to see how my body is going to respond.

I became immune to my drugs before and it was awful. I needed assistance with walking, dressing, and doing my hair. My husband saw me at my all time low, but he never judged me or made me feel bad for needing him soo much during that time. He was amazing during that time, he thought of things before I even realized I needed it. Like waking up with toothpaste already on my toothbrush, and having water with my pills on the night stand.

Now we are at a point where we want to start our own family. We made appointments with my Rheumitologist and OBGYN to ensure that everyone is on the same page and what is going to be best for the baby and me. We were so relieved to learn that both of my doctors had the same stance on the issue. (note: there has been not enough evidence proving that Humeria and Enbral are unsafe during pregnancy).
However, we are starting this process on a more conservative side, getting off all meds for three months before we start trying.

Today, I am feeling pretty strong, with only a few flare ups areas. I will continue to go about my day as usual and hope that each day I will continue to be strong.