Brain Fog

Hello……..This one might be short because I have been having a lot of brain fog the past couple days. I tell ya, if it isnt my body giving out, its my brain. It is so weird, that Sjogrens Syndrome has an actual real symptom called “brain fog”, and that its common!!!!!! Here I thought it was because I had strawberrry blonde hair!!  Guess I was wrong.

Today also brings with it bad fatigue…..like my legs feel like lead, and I kind of trip over my own feet at times because I am not picking my legs up totally. I was in the kitchen making toast and felt like I could NOT stand for one minute more. The humidity here in Minnesota is really bad this summer, and the dew point too. It is kicking me up the street, and down another right now. Oh if I could just go to bed right now, but NO…….I have to be at work. Thankfully, not running my tail off.

Yep, the brain fog ………Gosh, what was I going to write about tonight. I think something more uplifting than the past entries………Like OMG I am getting MARRIED in 9 days!!!!! In Vegas, ON Friday the 13th!!! It is gonna ROCK. I am so excited, but scared for the flight (which I have no idea why, I have never been afraid of anything like that really). I have our wedding and honeymoon all visioned in my head. I am marrying my soul mate, who is romantic, handsome, goofey, nerdy, gentle, strong willed, a great kisser, joke teller, a great dad………just to name a few qualities….all of which were a MUST for me. I am such a nerd when it comes to some things, and I am so glad I can be myself around Peter. I cant put into words how the mere mention of his name puts an insta-smile on my face. I can see his beautiful smile and calming eyes when I close my eyes. The way he looks at me sometimes brings tears to my eyes, there is SO much love in his eyes. I am so lucky (in the secular world), and so blessed by God in our Catholic world. Why do I mention the 2 worlds  like that? Well, ask yourself that question……..??? Good one, huh?!

Our wedding is going to be small, only 10 guests. I am SO excited that my mom and my son are going to be able to come 🙂  That part was up in the air until about a month ago, and I really did NOT want to get married to my one and only and not have the other 2 most important people in my life there!  Peter’s parents (whom I adore) , his 3 boys (my 3 step sons), and Pete’s brother and his fiance are going to be there as well. Thats it, close and personal. Ceremony, 1 hour cake and wine reception…..Yep!! Its gonna be a blast!!!!!!!!!!  as Peter has put on our home computer screen saver….August 13, 2010—Be there!

Too much time to Think=Spiral

Yep, thats right…….I have too much time to think right now, and sometimes thinking leads into a Spiral (downward).  The thinking is always prompted by something; looking at people’s facebook profiles, listening to a certain song, thinking of old memories long past, or maybe a certain smell in the air or just a feeling in the atmosphere. Regardless of how it starts, this spiral doesn’t want to stop until I break, somehow, someway.

Maybe this is my depression talking, I really have no clue. Tonight, the Spiral started when I was looking at an old friends wedding pics, new baby pics, new life achievements. I was like “huh, I wonder if she looked at my pics , would she see the same happiness in my life as I see in hers? If I was a stranger looking at my profile, what would I see?” Of course, it is unfair to judge a person by his or her facebook profile, as we really dont see the whole picture, we just see the parts that people want to share with their family/friends via the internet.

The spiral has not given me any answers to those questions either. It just wraps itself around me more tightly, and probes me deeper into whatever it wants me to think about—Which is just random thoughts of the past, people I used to hang out with, the lifestyle I used to live. Not that I would ever want to go back and redo the past, because I can’t, and if I could, it would only change who I am today (and I like who I am today).  Nonetheless, here I sit with my mind flashing pictures and old thoughts, sounds and songs, hopes and dreams that have all changed now. Change is not bad, it is actually better in some respects for me.  I am staring at my stunning engagement ring that sparkles with Peter’s love for me, dreaming of our wedding that is coming up in 15 days. I am fearful of traveling, as I have not done that since I have been diagnosed with the dreaded autoimmune stuff.

I think this Spiral wanted me to break, by writing what I just did. I feel better now, and the Spiral is loosening up. I know that depression/anxiety/autoimmune stuff is just a part of me. I guess I am a little worried that Peter won’t realize that is is just A PART, not the whole me….yet at the same time it is nothing to ignore. Such a delicate balance, yet the balance is there, along with the Spiral that will always keep me in check………….

The Good and the Bad

So, there is good with bad, and bad with good. Nothing can ever be just one way. No one and nothing is perfect. In a typical day, each one of us experiences every emotion we have: being sad, happy, angry, frustrated, impatient, thankful, forgiving……and so on. Being a nurse, a caregiver, I have always concentrated on everyone else. Their happiness, their pain, their needs. As you all have read, this year has been quite challenging for me overall with my health. As I was driving home this morning from work,talking with my fiance about how I felt, I actually appologized to him for being consumed with all of my ailments. Now at the time, I felt it was the right thing to do, to apologize. I mean I NEVER used to complain about how I felt, or share my true emotions and so forth. He accepted the apology, and said he noticed I was a little self consumed (to my surprise), and I asked him why he didn’t comment on it to me, or something!  He said he thought he would just let it pass, and I was like “ok”. I mean what do ya say?

So this afternoon, I was having a conversation with my 17 year old son, who really is wise beyond his years. I was telling him that I had a doctors appointment on friday, he asked why…..I told him I was depressed…….he asked why….I tried to explain, that even though my life is great right now, that my mind is just sad, and no matter what I say or do, I cant make my mind happy. He looked at me a little strangely, as 17 year old boys do, and said….hmmm. I said ya, I even appologized to Peter for being so into myself lately…….and this is where his wisdom shined……He said to me, “What is wrong with being into yourself for a bit, you are in pain and dont feel good, I would’t appologize for that mom”.  It stuck me at that moment, that he is SO right! Granted, one cant be so self absorbed that they dont care about others, but that is NOT me. I DO have a right to be “in to myself” every once and a while, I have a right to be a princess for a weekend, or to ASK someone to do something for me!! I am a caregiver, and now I have to learn to be the care receiver at times, and that is not easy.

This past few months has also been a test of my new found faith. Praying and praying and not seeing a thing change, or get better.  Asking God what part of his plan that I am living was going to help me, or change me, or encourage me…..WHAT am I suppose to be learning!!!!!!  I recently made a  new friend, through a friend, and we now exhange prayer requests. I told this person that I was not having a lot of faith right now, and doubting things……to which he replied “Hang in there, and keep praying, be persistent”, and gave me scripture to read James 1. It was perfect, and I am quoting this straight from the NIV bible: ” Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perserverance. Perserverance must finish its work so that you may be mature and complete, not lacking anything……….”

Alone

So maybe I should have titled this blog, Reflections of Robin. Thats what it is going to turn out to be, but who knows, maybe it all stems around my autoimmune diseases. Which came first, the chicken or the egg?

 I am not myself lately, at least not my New Self. I am depressed, period. I don’t feel like putting on my happy smiley face. I am anxious about everything, down to why my dog is sleeping with Gram instead of me.  I am questioning my faith, and I swear God is not hearing any of my prayers lately. OF course I know that this life is God’s plan, not mine, but I cannot make anysense of  His plan at this moment in time.

I am trying to focus on the positive things in my life right now, there are a lot. But depression is not about the things I have, or have going on, or not going on………depression is chemical, in my brain, and I cannot control that! I can focus on my wedding until I am blue in the face, and at the end of the day, I want to be alone, cry, and sleep. I really could use Peter’s bird joke about now, that just makes me smile thinking about it.

So I will make an appointment to see the Doctor, but do I go on new meds right now? before the wedding? I find that I am procrastinating a lot more lately as well, more depression and anxiety for ya. I need to take a break from work, but I cant, because I dont  have that “ALL POWERFUL FMLA”. God I am so sick of that, been a year now of stressing about calling in sick. I am stressed to the max, If i cant work, I CANT WORK, i dont know why that isnt good enough.

So yes, right now I do feel Alone. Despite my beautiful supportive mother, and my wonderful “make me smile” fiance, or my 17 year old Son who won’t give his ole mom a hug……..and my dogs. I just am alone. No one can understand what I am going through. Not the depression, the anxiety, the pain, the swelling or fatigue………the emotions, the uncertainty, or the complexity of everything together. So I will say my ” Hail Marys'”. Take my meds that I am not sure if they are even helping anymore. and say to my self, as I have been told to do now for many years…………”And this too shall pass”.

What we want

Let me say this loud and clear……..We (as in people with autoimmune diseases, chronic fatigue, chronic pain, or chronic “anything”), did NOT choose this type of life. We weren’t sitting on our butts one day thinking “hm, I want to be sick for the rest of my life, and have a sickness that people can’t see”. It just happened to us, like any sickness happens to anyone. Most of us, being sick, happened out of the blue–stuck us down one day, and will plague us for the rest of our lifes. To our loved ones, friends,to passers by on the street, we look completely healthy, and normal…….. but we aren’t, and we need our loved ones to realize that, and support us in anyway they can. Let me also say, that we do not WANT to quit working (or cut down in my case), quit having fun, quit having friends, or quit having a regular life………it is also something that happens as a result of our diseases, and we do NOT like it one bit. We don’t want to plan our lives around a sickness that no one can see, and that never will go away. We WANT to be normal. We do not want pity, we want empathy. When we have a great day, we want to just go with the flow, and enjoy it to the fullest…….when we have a bad day, we want love, kindness and compassion, and reassurance that this is only one day out of the many days we have left to live.

Just Laugh

I have had an amazing spiritual journey these past 2 years, and have had wonderful things happen in my life. I have met my soul-mate Peter, been babtized in the Christian/Catholic Faith, watched my son grow into a handsome young man. I have had the pleasure and honor of being best friends with my mom, and have made some great friends at work. I have discovered things about myself, rediscovered what is was like to be myself. I learned to laugh again, to be funny again, to dance in the kitchen at midnight, and sing at the top of my lungs (horribly too might I add).

  Among those things, one of the best of them all…..was leaning to laugh again.  I had been in a not so great marriage for 13 years, and had forgotten true happiness, and forgotten how to laugh. Oh sure, I would chuckle, maybe giggle at 5am with my coworkers, but I never truly laughed that happy laugh. It wasnt until I had been dating Peter for a month or so that I even realized the difference in laughters.

Peter and I were over at my mom’s one evening, and Peter was telling me a joke or something silly, and I burst into a laughing fit! My mom came from the next room and said “Robin, I havent heard you laugh like that in years!”. I didn’t stop to think about it at that moment, but later I did. Boy was she right, I hadn’t laughed like that in years, hadn’t felt happy like that in years. It felt great.

 Peter and I have been together for 2 years now, been engaged since Oct 1st, 2009, and will be getting married Aug 13th 2010. I have instucted Peter, that when I am feeling really down, or in pain, or am really fatigued, he is to tell me a joke…..and make me laugh. He says his mission in life now, is to make me smile and laugh, and boy does that feel good to have someone care that much about you!!!  I made him promise me, that if I was ever hospitilized or in such extreme pain, that he tell me the “Bird Joke”. I am not going to tell all of you the bird joke, but lets just say it involves Pete acting a bit, and everytime I hear it, no matter what kind of a mood I am in, it always makes me happy.  Sometimes all he has to do is pretend he is going to tell me that joke, and I laugh a lot.

Anyway, laughter is our friend. It makes us feel better when we are down, or in pain. It brings people together, makes us smile, brings us closer together too. We can laugh until we cry,  or until we think we can’t laugh anymore. I hope all of you know what true laughter is. If you dont, try and learn, or relearn to laugh as I did. It will bring you great happiness……………Just Laugh!!!!!

The Second 2 years of living with autoimmune diseases

Ok this blogging is pretty cool, I have never written down “the story” before, and it is cool to see it in print. It validates it, me, that all of this is real…………..

Onto the 3rd year of being sick (also referred to as “but you dont look sick”). I have to explain this a tad for those of you who are questioning right now. Ya see, there are a lot of us out here in the real world, who are very sick, but dont look like it. We look normal, we work normal jobs, we try to function normally, to maintain every sense of normalacy that we can, we have family, go to movies, go on walks, do the stuff we need to do to keep sane…….but we hide that we are truly sick. No one, and I mean no one thought that I was as sick. The diagnosis of RA and Sjogrens Syndrome meant really nothing to anybody, they were just words. Everyone (and by this I mean my mom, husband at the time, and son) saw me taking my pills, saw that I was tired a bit more, but did not “get” it. Heck, year 3 after my dx, I didnt get it either. None of how my life was going to change sunk in, because nothing had changed, except a few more pills to take, and some aches and pains and a little more sleep.

Year 4  (current year) on the other hand, woa……what a rude awakening.  Muscle aches and spams, random joints swelling and pain, lymph nodes swollen and painful, tongue swelling up,sores in my mouth, horrible fatigue, dry mouth, dry scratchy eyes, pain, pain , and more pain, and more pain on top of that. My core temperature changed, instead of being hot, I was now cold all of the time, electic blanket and throws around me all the time, hot packs surround me when i am in bed. Sometimes I get out of bed, and can barely walk on my feet. I have had to buy a whole new wardrobe of shoes just so I can tolerate to walk. Some days I cry, because “this isnt my body”. How can I be 38, and barely able to walk somedays, and be in so much pain. I DONT WANT to be like this, I want to be able to do anything I want, anytime I want, without thinking about it, and I CANT!  I am crabby inside, a lot, because I am in pain, I constantly appologize to my family if I am crabby, I dont mean it, its just that I dont feel good. Work is a whole other story, Family Medical Leave (aka FMLA) has now run out for now, and I cant call in on those days I can barely walk, in fear I will loose my job. My coworkers know of my afflictions, but they dont “really get it” either, and how can anybody really “get it” if they have never lived with chronic pain/fatigue/joint swelling/tongue swelling/brain fog, etc…………….Ya know how people generally ask “so, how are you today”……ya, i dont really answer them, because do they really want to know? I doubt there would be time for me to tell them how I am today. I smile, say I am ok, and go on my merry way.

The Start of it all

Hello…..Decided to start blogging, and see what this world is about. I need a place to write down my thoughts, as I go through this journey of life with autoimmune diseases. So here is the beginning…….

About (because I cannot remember exactly, which is not typically me) 4 years ago, during the winter time, I started waking up, not able to move my hands very well, and with extreme pain in them.  I had also had an episode at work, where my tongue literally swelled out of my mouth, on a random night after drinking diet flavored water. I tried to poo-poo both of these things, as I hate going to the doctor, but this pain was not to be poo-pooed. So…….reluctantly I went in to see my regular doc (whom I really like), and she decided to order some interesting lab work, just to rule some things out…..Welllllll

   Nada was ruled out……most of the preliminary tests she ran were all out of whack. I went in to see her again to review the results, only to find out that she could not diagnosis me, but rather wanted me to go to a rheumatologist.  I was a little worried, but just a little, as I thought, “i doubt something is wrong, all of this pain probably is just in my head”. You know the feeling, when you go to the doc for something you think is terrible, and they tell you its just a cold and send you on your way!?  Anyway,  I then made an appt with the “rheumy”, but had to wait 3 MONTHS to get in to see her…….meanwhile, i continued to have painful hands, and then painful feet, and then fatigue, etc………..

3 months pass, and I finally go in to see the Rheumy, who did a very thourough examination of every single joint in my body (some I didnt even know exsisted). She commented on every joint she touched, that it was swollen and warm (heck all I knew was that my hands hurt). She had a worried look on her face as she looked at my hands, that had reddened areas on each joint. She reviewed my labs, ordered new ones, and diagnosed me with Rheumatoid Arthritis, just for starters. She also had the feeling, that I had Sjogren’s syndrome as well or maybe lupus, due to some of the lab work.  She started me on medication right away, prednisone, Plaquenil, Celebrex, and Tramadol for pain (nevermind the other meds I am on for high BP, anxiety, depression, and birth control).  I was to make another appt to see her in 3 months to see how the medication was working, and then to review my other lab work. Sooooooooo…………

Those 3 months pass, and I actually did feel a bit better. No more morning stiffness or pain in my hands. I thought life was good, or at least getting better. Needless to say, this was the START OF IT ALL!!!!

Back to the Rhemy I went, labs had improved, but still not normal. I was informed that some of my labs will never be normal, because that’s just the way autoimmune diseases work. There is no cure, and there is no making any of it go away. But at this visit, i was also diagnosed with Sjogren’s Syndrome, and possibly Fibromyalgia, but NO LUPUS (although we still have to watch my labs, just in case it decides to join the other diseases).  I really didn’t know what this diagnosis meant, because I never really have heard about it, and I certainly didnt read up on it even though she had suspected I had it as well. My mom has been with me to all of my appointments too, I forgot to mention. I always want someone with me, because I tend to forget to tell, or play down my symptoms—after all I am a nurse, and nurses don’t get sick, right?!!!!!

So I continue on with the plan of care, prednisone,Celebrex, Plaquenil, Omeprezole now because the meds are taking a toll on my stomach, Tramadol, and other meds for the other crap I deal with too!!! and I am instructed to come and see the Rheumy in another 3 months……….. Well you can see where this is going, lots of doctors visits, lots of medication review, symptom review, and so on…….Things were pretty stable…..during the first 2 years of my autoimmune diseases——-The Start of IT ALL!!!!