Archive for the The Blogs By Kate Category

No One Understands My Life – In My Life By Kate

Posted in The Blogs By Kate, Week 15: Making Others Understand on October 17, 2011 by Cookie Has A.S.

I sacrifice and sacrifice whenever I can but I feel like no one sees. I am tired of being the middle child, even as an adult. It makes me sick. I love my mother but every time I turn around she makes decisions for my brothers and if those don’t work out she does what she does best for herself. I am never considered. I never have been by her. I remember realizing this when I was 12 and it never stopped from then on. Why I never have learned? Because she is my mother and I love her and I always have hope that one day, just one day I will be understood. It was always OK to leave me behind unless I was needed to help with something. Was I ever allowed to keep the things I wanted? No. Were my siblings? Yes. Sure this sounds like a jealousy post and you would be right in that. You yourself wouldn’t understand unless you knew the hell we went through growing up at times. I am sick of my place in this world. I have to forcefully get what I want and or need and my husband has never understood this but it goes way back to my childhood obviously. I spoil my daughter constantly and I am almost positive it’s because of the way I had been treated.

I am tired. I am tired of being ill physically, chronically and emotionally. I feel like no one in this world understands me and the people I want most to lean on do not care. No one in my life understands my emotional or physical pain. No one wakes up with me when I moan and cry from muscle or bone pain at 2 AM. My husband cannot stand to hear me speak more than 10 minutes after he gets home from work. He just wants to avoid everything. I am hurt. I feel like I have no one in this world. I wish I could make others understand, I wish others would understand but I feel so alone and lost anymore. No one understands in my life. I feel like this isn’t even coming across correctly. Feeling very misunderstood in this world.


Self Esteem and Chronic Illness By Kate

Posted in The Blogs By Kate, Week 12: Self Esteem on September 26, 2011 by Cookie Has A.S.

I know I may not be beautiful to everyone.
I know my back may be starting to look funny.
I know my mind may go some days and make me look awkward.
I know my outfits may make me look silly.
But I am me.

I know I am not the skinniest like the models you see on tv.
I know I am not near the average looking beauty.
I know some days I cry when I look in the mirror because I see what my disease [AS] is doing to my body.
I know some days I cry because of the things I have DONE to myself because of my other disease [bipolar].
But I am learning everyday to love me.

You know how I learn to love me?
By watching others love themselves. Others who are less fortunate love their loves anyway. They love life no matter what. Sure sometimes it really makes me so angry they can still be happy, but deep down inside it’s envy. Envy that they can still love life when I can’t at that moment. I can’t right then because my self esteem is so bad right at that moment I want nothing more than to curl up, and hide in the house- even away from my family. To hide my disease ridden body- from everyone. To hide what it has done to me both inside and out.

Yes, I am learning to love me but it is hard. I try to find joy in everything in life, and I can find joy in so many things, but in myself not so much. At least not the last few weeks. Depression has taken it’s toll as my disease has worsened lately, and all because I haven’t had treatment. I have embarrassing nodules on my toes- must wear sneakers- thank goodness it just hit fall last week, though it’s still hot here.. My back is looking and feeling worse. I am swelling everywhere and look quite heavy but no medicine to help. I am living off pain medicine but only when I desperately need it, because I would never, ever, take them all the time. I refuse. So it’s hard to have good self esteem when disease is ripping apart your body and you cannot get your treatment. This makes me think of all those out there unable to receive treatment ever. It makes me want to cry for them. I am sure though, most of them, find some joy in life and move on. This is what I am learning to do. Learning to love myself and find happiness in life.

Most days I hate what I see in the mirror. I will be honest. I hate being in photographs and now I don’t even like meeting others or going in public but I am wishing and praying for a little hope to come my way. Just to be bitten with a little positiveness and find myself beautiful again. There was a time I found myself beautiful. I want that time back, but we can’t have the past back. We can only move forward.

I think my first step will be acceptance. Then I can move on to feeling beautiful. But tonight at this moment- I will accept I am beautiful. Sure, I can do that if even for a few hours alone. I think it could be a start.

Hug Me, Reassure Me By Kate

Posted in The Blogs By Kate, Week 11: Need on September 19, 2011 by Cookie Has A.S.

There are lots of things I need in this life but I try not to dwell on them. I push them further and further to the back of my mind until they are only a memory because most times, it’s almost impossible to meet my needs let alone a want. My first and most important need I have right now I could say is reassurance.

Maybe it’s reassurance the sky is still blue, Maybe it’s reassurance the grass is still green or maybe it’s just reassurance I am still breathing and the Earth is still turning. My pain reassures me most days I am here but sometimes makes me quite oblivious to time and date especially when it lasts a very long time but I need positive reassurance. I need to know it will pass. I need to know I will be OK. I need to know I will wake the next day and if not, that my family will be OK. I need to know I can beat this AS and I can beat this bipolar. I can beat the demons in my mind, reassurance, that I can beat the gremlins destroying my insides, reassurance.

God help me. I need reassurance.

My Symptoms Of A.S.(Ankylosing Spondylitis) By Kate

Posted in The Blogs By Kate, Week 10: Symptoms on September 12, 2011 by Cookie Has A.S.

I wish I could say I have little symptoms of AS, or rather minor at any time but in my case I have flare ups quite often and quite severely. The hallmark of AS- neck or spinal pain I have the most often and most every time I wake in the morning along with stiffness. It is the most aggravating of everything I go through and the most painful. I have a tendency to want to physically “adjust” my spine and neck which is very hard to do when stiff and quite painful. Sadly, sometimes I even put off using the restroom until my spine loosens up a little and I feel like my eyeballs are floating! Gross? Maybe but you deal with a stiff spine and trying to manage the restroom as a lady. Not an easy task.

Then there are my eyes. I have been dealing for months with my eye issues. I can’t seem to get them under control and have been on constant steroid drop usage. Those of us with AS tend to have a lot of eye flare ups. I am hoping soon enough my eyes will be doing better. The AS affects everything internally. I can feel it everywhere at various times in my body in various locations during flare ups. Sometimes in my heels real bad, my neck consistently, or my lower back will feel bruised and I want to stick my abdomen out when I walk which probably makes me look 30 pounds heavier than I already am!! My toes have become locking, and what they call trigger joints or trigger toes like you would get trigger fingers. Why this happens I don’t know because I have never ever heard of anyone getting that in their toes but my rheumy understood. At least someone gets it….Lately another oddity of AS, arthritis of the left thumb and I have to wear a thumb stabilizer all day. The top joint in my thumb has been in severe pain. So yea, this sounds like I am complaining but I need you to know AS affects everywhere. EVERYWHERE. (my elbows, my jaw…my chest)

AS can even rip you apart on a good day or a good month and I mean when you aren’t flaring. It tears you apart mentally. Depression rips through your brain and tears you to shreds. It plays with you. It taunts you and teases you. Saying you are better only to have a flare up again and then realize you aren’t good enough for anyone. Or it tells you constantly you aren’t a good person and that you aren’t worthy of being alive. It says you don’t contribute to this world. Depression can be more defeating and daunting than being in physical pain because you cannot get away from it like pain can be gotten away from with a pill or pain can distract you from the depression at times because it is severe.

The symptoms of AS can be frightening for the person suffering and even for the family and friends watching. Or maybe even the one reading about them. Those of us who live with them learn to somehow deal with the physical and emotional pain and symptoms somehow. Some of us can weather the storms of the pain and some of us can’t. Sadly some of us have given up at times and the symptoms have almost done me in too, but these days I refuse to let the symptoms of AS do me in. I am a fighter now and I will continue to be.

Hanging With The Handicapped By Kate

Posted in The Blogs By Kate, Week 09: Social Outings on September 5, 2011 by Cookie Has A.S.

What can I say about being mentally/physically disabled and chronically ill in regards to social outings? Well, not much, I suppose. At first having bipolar I was on and off a social butterfly, being completely outspoken and never afraid to approach or ask a question. I had my select group of friends to go out with until a lot of things changed in my life. My bipolar disease worsened, causing me to become reclusive. I was eventually diagnosed with ankylosing spondylitis, which created too much fatigue and severe pain on days to get out of bed or the house. I have since gotten the bipolar under control and feel more of a normalcy than in the past which is beneficial but my AS sadly seems to be having increasing flares over time and worsening pain when the flares come on.

So getting out of the house is a rarity unless it’s to a doctor’s appointment and when I do get out it’s very spontaneous which drives my family absolutely bonkers. I have learned to have to live spontaneously and even on bad days have had to reschedule doctor’s appointments only to aggravate offices without meaning to. You might think they understand but 8 out of 10 times they don’t and they really don’t care but I don’t blame them, they are a business too not just there for free. Maybe that isn’t compassionate of me but I have to see their point too, I suppose. I have three calendars I keep, one on the fridge, one in my purse and one on my desk and they are all to keep up with the multiple appointments I have for my whole family. It does get hard some months as we have many visits but we somehow work it out even if we have to move things to other months or cancel things altogether. You have to pick and choose what’s important to treat when you are sick sometimes, unfortunately. I love to spend the afternoon shopping with my daughter on those outings. This is my most favorite time of all but also my most trying and requires pain medicine for two days usually afterward, but it’s totally worth it. The quality time we spend together is something I will always cherish.

I wish I could be that social, outgoing, butterfly again but unfortunately I have had to change and well, I hate change but I am living with it.

The Power Of Friends By Kate

Posted in The Blogs By Kate, Week 08: Friendships on August 29, 2011 by Cookie Has A.S.

They can amaze you.
They can surprise you.
They can support you.
and they can sometimes even let you down.
One thing I have learned since my first friendship as a child is that friendships evolve as you mature even the new ones you make as you go into your 30’s. Friendships also vary depending on what you have in common with the person, be it an illness, hobby or other person. Some friendships also vary widely by age. Often many of my friends are much older than I am but I have always liked that about my friends. Most times, not always, there is more maturity, more respect and more satisfaction with who they are and who others they know are- this is why I think I choose older friends. I think older people overall have a more stable attitude and outlook on life and are more calm. Now a lot of people my age (early thirties) aren’t ready to be around such calm friends but at this point in my life that is what I require. Being chronically ill I cannot be like other “normal” women. (I hate that term because I don’t believe in normalcy anyway but for the sake of argument and discussion we will use it here) I require in my friendships peace, support and love. Just like I expect the other person to receive these from me as well. Friendship to me is all about give and take- HUGE with me is give and take. Sometimes obviously one person gives more than takes and vice verse but that’s where the support and love comes in when someone is struggling. It’s true we want someone who is confident at least partially with themselves and has an optimistic outlook because if they didn’t how would we ever make it out of our black holes? There has to be some sort of balance because not everyone is always happy nor is everyone always perfect. We are all human after all and have emotion. We must be there for one another. Compassion, sympathy, empathy and love. I have felt abandoned by friends in the recent past, turns out I was pretty wrong, but still it hurt and I managed to torture myself in my head about it when all I needed was a little extra confidence and love at the time. My advice if you are in those situations is to just be honest with your friends. What would it have hurt for me to be honest with them? Nothing.

I value my friendships highly. They mean as much as family to me. Sad? maybe but my heart tells me it’s not.

The most I can do for my friend is simply be his friend.
~Henry David Thoreau

The only way to have a friend is to be one.
~Ralph Waldo Emerson

I Don’t Sleep Anymore, I Wish I Could By Kate

Posted in The Blogs By Kate, Week 07: Sleep on August 22, 2011 by Cookie Has A.S.

 I don’t sleep anymore. I wish I could.
You would think it was from bad thoughts invading my head-
I don’t sleep anymore. I wish I could.
You would think it was from pain-

I don’t sleep anymore. I wish I could.
I lie in bed half awake, half dreaming about the day.
I don’t sleep anymore. I wish I could.
I wake after two hours in frustration, wide awake with no hope of falling back asleep.

I don’t sleep anymore. I wish I could.
Sometimes the pain is too much and I can’t breathe.
I climb out of my bed in agony in search of a pain pill.
I don’t sleep anymore. You know I wish I could.
I am sad and the emotions are just too much.
so I lie there crying wondering if this will be my life forever?

I don’t sleep anymore. I wish I could.
My brain doesn’t want to shut off.
My body hurts so bad I can’t breathe.
I lie there in tears thinking it has to get better. It has to! This pain can’t last forever!
I don’t sleep anymore. I wish I could.
It gets so lonely when you are the only one awake in the wee hours of the night or morning.
It gets old, very quickly.
The tears get tiring very quickly.
The nights I am up and pain is not distracting me are actually worse because I am alone in my thoughts.
I don’t sleep anymore. God I wish I could.