Benefits to Being Chronically Sick

I haven't written in awhile and the reason is actually a happy one. I have A LOT of energy. It started with have two good days one week, the next I had four and then all of a sudden whatever weird illness I had that we though was Chronic Fatigue Syndrome was gone! Now I don't know if it is gone for good or just laying low but I will take what I can get. Perhaps my doctor was right, before I started working she told me not to, that my body wouldn't be able to handle it. But it was a desk job, really, how much toll could it take on my body? A whole bunch it turns out, my last day of work was August 6th and it was only at the beginning of October that I began feeling better. It took me TWO full months to start to feel better after working full time at a desk job for four months. During those two months I went through many emotions, wrestled with a lot of issues. One was not being able to work, it made me feel useless, lazy and put me in despair, another issue was the fact that the girls at work and my friend whom I have known for ten years that worked with me as well-turned their backs on me, refused to speak to me, blocked me on facebook (I am not even kidding) because I didn't give them a play by play of my illness (other than my one friend I had only known these people for a few months. Well then I watched a documentary called "Happy" on Netflix, and another about the Dalai Lama, these two things changed my thinking. I will get into that on another post but for now I figured I would share the benefits I've found in being chronically ill, some are sort of shady but they are true and they are funny lol. (Naturally these won't apply to everyone as we all have different levels of illness and disability)

-Because I can no longer work I now have time to follow my interests and passions, some of them have changed, I certainly can't work on an ambulance anymore which was my true passion but now I have time to explore different things. Whether it be reading about the Dalai Lama, reading a mystery novel, cooking when I have the energy or crafting.

-When you wake up feeling really crappy you don't have anyone to answer to, you can take it easy, if your kids are in school or you don't have kids you can lay in bed all day or watch movies all day.

-When your child is sick you don't have to try to figure out who is going to care for them or call out of work and risk pissing off your boss.

-If there is an event that you really really don't want to go to you can just say you aren't feeling well and skip it.

-You can stay in yoga pants all day without being judged

-You know who your true friends are , it isn't easy to stick by someone who is chronically ill, those who stick with you are true friends

-You are no longer afraid of needles, it is impossible to be afraid of needles when you are chronically ill, you get desensitized to them after then 100th poke

-In a few decades you won't need to use your lights at night because you will glow in the dark from all of the radiation from the scans

-You can love the weather where you live. I live in upstate NY, we get SLAMMED with snow every winter, I adore winter,  adore the snow, adore the storms....why? Because I don't have to go out in it if I don't want to. While everyone else is scrapping the ice off of their cars I am in my jammies with a hot cup of coffee watching the gorgeous snow fall.

-You know what really matters, when you are chronically ill you only have so much energy so over time you toss the things that aren't important so you can save your energy for the things that are.

-Compassion, when we face adversity we grow strong but we also grow compassionate (hopefully, some of us just choose to be angry) You can use that compassion to help others.

I'd love to hear from you, what benefits do you see in being chronically ill?

I think something that is important to remember is that we aren't our body. When we look in the mirror we think we are seeing ourselves but truly we aren't. We are seeing our body, the vessel that we inhabit. We are so much more than our body, the essence of us lies within our soul and I believe that our body and our soul are two different things. My body may be betraying me, failing me but I can't allow my soul to break because without my soul, I am nothing. You can live in a body without limbs, in a body that won't move, in a body that is slowly dying, YOU, your thoughts, your beliefs, your personality, your emotions are still there. But what good is a perfect body without a healthy soul? I'm not speaking religiously, like you need to save your soul. I'm speaking just matter of fact, you need to take care of your soul. If you are depressed you need to get help, if you are constantly speaking to yourself, of yourself, in ways that you wouldn't allow anyone to talk to your best friend, well then there is a problem and you need to work on building yourself up. Whatever you need to do to take care of your soul, do it, whatever you need to be happy, do it. It's hard living like this and it is all too easy to give into the sadness and depression that comes with the loss of who you were and the dreams that you had for yourself so we must be extra vigilant.

Also, by finally coming to the realization that I am a soul in a body, rather than I am broken, by separating those things I am able to separate who I am from the illness. It is easier for me to say my body needs to rest now so I will rest, before it felt like I was giving in, like I was a failure because I couldn't push through, I felt like the disease was winning. Now I see my soul and my body were at odds, now I am kinder to my body. I'm not sure if this makes any sense to anyone else. I'm trying to explain it and I don't feel like it is coming out the way that I intended at all. So I will end this for now lol.

Chronic Fatigue Syndrome or newly named Systemic Exertion Intolerance Disease

My life has been stolen away from me, yet again, by another disease, just some more letters to add to my Alphabet Soup. Leave it to me to get a disease I never even believed in, I just thought it was a catch all diagnosis that a doctor gave you when they couldn't figure out your issues and wanted you off of their back but now I know that this is very real.

I'm tired....no that isn't right, that doesn't describe it, I'm fatigued....yet that doesn't full encompass it either. Imagine you are running the last leg of a marathon, pushing as hard as you can even though you feel like you have nothing left, drained to the very last drop of energy, you are running on fumes...and then you collapse at the finish line, oh the sweet relief of lying down....yeah thats CFS but you aren't running a marathon, you are just trying to get the grocery shopping done and when you sit down there is no relief, you still feel like you are expending that energy. Sure if you sit and do nothing for a few days you might feel a little bit better, lethargic but not quite so bad but all it takes is going up the stairs to use the bathroom and you are right back where you were.

They can't pinpoint what causes it, many people come down with a very bad sort of flu and just don't recover, others it just happens. For me, well, I think someone made a very very bad mistake that will cost me the life I was supposed to live. This is theory of course but it makes a lot of sense. I've read that the rubella virus is one of the viruses suspected to cause CFS, I didn't have rubella but I did get a rubella booster during my medical clearance for my new job at the hospital. How was I to know it was a live virus? I'm not a doctor. I have suppressed immune system and I'm not supposed to get live virus vaccinations. Perhaps that small amount of live virus was enough to trigger CFS, all I know is a few weeks later I collapsed at work and I had to be taken to the ER, I was more and more tired as the weeks went on but I had started a new job and was working lots of hours, I figured I just wasn't used to it. I started my job in April, by August the doctor had pulled me out of work, I never got to go back.

Just a few months ago I was active, I did yoga every day, I got through household chores with the annoyance that household chores brings with it. I grocery shopped and ran errands without a second thought. Now I sport a handicapped permit, a cane and am wheelchair shopping.

No treatment. No cure.

I am officially beginning life as a disabled person.

Letting Go

I quit my job today, it sucked, badly, but I had to let go. Whatever is going on is more than my RA flaring or one of my other illnesses. All of my blood work is coming back normal which leads me to believe that it could quite possibly be Chronic Fatigue Syndrome. Leave it to me to get another disease that I didn't really believe in. I haven't been diagnosed yet but all of the symptoms are there. Crushing fatigue that has turned my life upside down, yet I have insomnia at night, muscle weakness, night sweats, brain fog, cognitive issues, muscle pain and normal lab tests....

Letting go is hard, almost harder this time around. I finally felt a little bit better, I got a job, I felt like I was becoming the old me again and then I had to let me go again. People tell me that I should make new goals for myself, that I should learn to appreciate the life I have now but I haven't quite figured out how. How do you appreciate a life that you never wanted to lead? A life that feels more like existing than living? I'm still the same person inside, my mind is still the same, my body just won't cooperate. How do once active people that became paralyzed do it?

I know this is a weird place to end a blog post but I'm just at a complete loss right now.

Not Feeling Good Enough

Do you ever feel like a fraud? I do, all of the time, I feel like somehow I should just be able to push past this, power through it and be fine. I still find myself trying to keep up with other people and then when I can't and end up on the couch because I crashed I feel like I'm just lazy.

I feel like a fraud using my handicap permit, even though I can barely make it into the store from my car without feeling like I'm going to pass out, I look fine. Looking completely normal I get onto the motorized wheelchair and do my shopping, I see the looks, I'm sure they are more wondering then judgement, at least I hope so....at the end of my trip, though I haven't walked and my husband and daughter have put all of the items in my cart and in the car I leave the store feeling completely and totally wiped out....but still I feel like I should be able to push through. Like somehow I have talked myself into having these diseases...maybe its just that I can't believe that this is my life...

Accepting Chronic Illness

I've had RA for six years now, fibromyalgia for nearly as long and I still haven't accepted it....I want to, I desperately want to because I know acceptance will bring with it a new chapter of my life, not the life I thought I'd have but a new life that can still be beautiful. So why can't I accept this illness? I think that answer to that is because it is not static, it is up and down, ever changing and on my up days I get glimpses of the person I used to be and on my best up days I feel like that person and the bad days are quickly forgotten, almost as if I believe the worst is over and I am back to who I was. Part of me also feels like I can just push through it, I've pushed through every bad thing in my life, forged on and plowed right through it, that is until RA came along. It's not something that you can plow through, if you try you end up worse off but my mind still thinks I can and it feels like accepting=giving in. Mentally, intellectually I know that isn't true but my heart can't quite accept it.

I was the one that always had a super clean house, I had a cleaning schedule in fact lol, I made all my food from scratch, no artificial anything, people loved coming to my house because they knew they were going to have some delicious food to eat. Now I sit here, the room is a wreck, the dogs decided to throw a party during the night and there are shreds of dog food bag every where, my husband is sick and his dirty dishes are stacked high and I have just put the laundry to wash again because it didn't get put into the dryer in time. Here I sit on the couch, looking around at the wreck that is around me and I'm too tired to do anything about it. My upstairs living room looks like a clothes store exploded in it because I gathered all of the clean laundry as well as all of the clothing from my daughters room to go through to see what fit, what didn't and what we could donate....I lost steam in the middle of the project and there it sits.....Ugh, I was the girl who went to college full time and worked three part time jobs all at once and didn't get tired! I worked out 5 to 6 times a week and was a pretzel when it came to yoga, yet here I sit, overweight and unable to walk up the stairs without being winded. I feel like I have been robbed of my life and I'm mad as hell. But being mad as hell isn't going to get me my life back, it is going to rob me of the life I have ahead of me.

So now I must learn to let go of my dreams and build new ones, let go of the life I knew and walk into the unknown life I will now live....I just don't know how.

Disabled....

Yesterday was the first day that I truly felt disabled. Yes I've felt crappy and sick, in pain and terrible for years but in my mind I was just sick, I had a sickness, but disabled? If I said that I felt like a fraud, I mean I had days when I was able to clean my house, walk around the mall, work, garden and even lay a floor, okay it was a snap together tile floor but I still did it! Yes I was achy after those things but I would bounce back. There were other times that walking to the car had me ready for a nap and I would just lay there in pain, crying, wanting to say "help me" but knowing there was nothing to be done but I always bounced back, always. It's always been a roller coaster, good times and bad times but never once did I think of myself as disabled. I thought of disabled people as people on oxygen tanks or in wheel chairs, people who had conditions that always kept them sort of static, you know, they still have up and down days but their up days were still drastically different from "normal" people, if someone saw them on their good day they would still be able to stay they were disabled. This is just not the case for me, on my good days no one would ever take me for disabled, heck , even on some of my bad days, unless I were using my cane people would take me for normal and when I do use my cane I catch strangers looking and probably wondering why I even need it.....

But not yesterday, nope, yesterday I definitely felt disabled. I went to my primary care doctor because my rheumatologist was out of town. I have to say I adore my primary care doctor, she knows me well, takes me seriously, listens to what I have to say and cares about all aspects of my life not just my physical health. When she saw me and then I explained to her how badly I had been feeling she said to me "You've been going downhill in your health since you started working again", I couldn't argue, physically that was true but mentally I had never been better, I found myself again through working, I wasn't just mommy or someone's wife, I was Jenny, I was confident and competent and had goals again. Working brought me out of my depression and gave me a new purpose in life...which was about to come to a halt with the next words out of my doctor's mouth. "I want you out of work for two weeks and then when you go back, if you go back (of course I'm going back!!) you can work two eight hour shifts a week maximum." I left the appointment with my note for work and my signed handicapped permit application for my car....I felt limited and it's true I am. But before it was setting my limits (which turned out oh so well because I worked until I made myself sick) but now to have a medical professional telling me limits.....its just different. I guess before I could play it off as me being overly dramatic or wimpy, so I would press on....and now, I have someone saying to me, no, you really can't do this.

Yes, definitely felt disabled yesterday....

Bad RA Day Comfort Box

I came up with an idea for myself which I'm sure is not a unique idea but I was pretty excited to think of it all the same. Bad RA days suck, I'm not just talking about stiffness, pain and fatigue where you feel like crap but you muddle through, I'm talking RA Miley Cyrus Wrecking Ball style. Where the fatigue is so bad that you feel like you are sinking in quick sand. Where the effort it takes to sit in even a reclined position feels like an Olympic event. On those days you need to be good to yourself and this is where the comfort box comes in....I'm not talking about a cute little shoe box, I'm talking a nice moving box full of stuff. Somethings I will be putting into mine

The most plush, soft, throw blanket that I can find

A T shirt that is at least 3 sizes too big

A pair of stretchy, loose lounge pants that are also a bit big (I can't not handle the constriction of clothing when I am having a bad day)

A large plush pillow to put under my knees

Some movies that I love but don't get to watch often, or perhaps a season of a TV show that I haven't seen yet and I can have a marathon

A delicious smelling candle

Perhaps a couple small edible treats


I'm sure I will think of more.  What would you put in your comfort day box?

Rheumatoid of the Cervical Spine

I went to the rheumatologist the other day for a check in to see how the addition of methotrexate was working along with my Humira. I have been noticing over the past month or so that stiffness and pain in my spine was waking me up at night and in the morning my spine would stay stiff for hours. Something that I have never experienced before, it starts in the spine in between my shoulder blades and goes up into my neck. I constantly feel like I need to "crack" and rotate during the day and when I do it sounds like rice crispies. I brought this up to my rheumatologist and asked if one can get be affected by RA in the spine. He said it was pretty rare but agreed to be on the safe side and ordered some xrays. The very next day I got a call from the doctor's office telling me that I do indeed have been affected by RA in my cervical spine, right now it is mild but I can't lie, I'm a bit nervous. The night of my xrays I decided to research RA in cervical spine and the results were not pretty. It can stay mild or it can progress. When it progresses it compresses on nerves, it can lead to black outs, incontinence, paralysis and sudden death. Luckily for me we caught it, we know it is there so we can keep an eye on it. If and when my cervical spine becomes unstable there is the option (well to me its not an option see death is the other and I don't consider that an option) to have surgery to stabilize the spine. Yes there will be limited movement and other side effects from surgery but it is better than dead I say.

If you would like more information on RA in C Spine please click on one of the links.

http://www.uscspine.com/conditions/rheumatoid-arthritis.cfm

http://rheumatology.oxfordjournals.org/content/45/10/1183.long

Is it time? Rheumatoid Arthritis and Handicap Parking Passes.

If you had told me last month that I would be considering asking my doctor to sign off on a handicap parking permit I would have laughed at you, but lately I have found myself really thinking hard about it. I certainly don't need it all of the time, there are days when I can walk and be just fine and then there are the days when I am in so much pain that just walking 10 feet to the bathroom seems like a gigantic undertaking. Those are the times I need I would use it.....but I struggle, the internal struggle is real. I think about all of the people who are far worse off than I am, who literally cannot breathe well enough on their own to walk from a regular space, or those who are in wheelchairs? Certainly I should suck up my own pain and hobble a bit further, right? I mean it just hurts, it isn't like it is going to kill me or cause a medical emergency if I have to walk farther, right? But then there are those cases such as going to the beach, I know, you are thinking , if you are in that much pain why are you trying to go to the beach, right? Well many of you know that sometimes you try to be normal even when it is evident that you aren't, sometimes you do it for your kids and family and sometimes you just get plain tired of RA taking things from you so you give it the finger and go despite the pain. But the beach....yes.....15 minutes of walking from the closest parking spot you can find until you have any hope of finding a place to sit and rest. Then I could see using it....I don't know, maybe it is all of my years in the medical field that has made me stubborn to my own detriment....I just don't know.

Then there is the fear and aggravation of the inevitable confrontation when someone (with the best of intentions) rips me a new one for parking in a handicap spot that I obviously don't need since of course I don't look disabled and I'm only in my 30s....not sure if I want to open myself up to that. It's not that I care what people think, I just don't know if I want to deal with one more aggravation.

How about all of you? Do you have a handicap parking permit? What made you decide to finally get one?

Rheumatoid Arthritis and Alphabet Soup, um, what?!

First off, please excuse the appearance of my blog if you are seeing it and it is in shambles. I am in the process of creating it and making all pretty but I thought I would write first and decorate later, difficult as that may be for me!

 I'm coming off of a very long hiatus from blogging, I used to write a blog called The Retro Housewife which actually, much to my surprise, had a decent following. At that time I was living my dream, being a stay at home wife and mother, making my home a haven for my family, cooking from scratch, everything all natural, doing yoga, going to the gym,  just being as domestic as one could be without be an annoying Martha Stewart wanna be. Then....wait for it!....yup....RA. Well fast forward to RA, Celiac Disease hit but once I was diagnosed and went gluten free I felt great, RA was the down fall. Slowly, piece by piece, my world as I had created it for myself and my family started to fall away until I couldn't do all of those things that all together made me who I was. I try very hard to always be honest, authentic and real so naturally I shut down my blog because I no longer had anything to write about. I tried through out the years to start other blogs but my heart just wasn't it in, but now, six years after being diagnosed with RA I have found my new identity and while many of people will probably close this browser window after I say this....well I'm just going to say it anyway, part of that identity is RA, it is a sick person. No, RA and my other issues do not define me, they aren't the total sum of who I am but they are some of the blocks that build the tower that is me. I have accepted that (although sometimes, between you and me, I think I still have periods of denial-on the days when I am feeling well).

So why write about RA? Well, I found myself reading some other RA blogs and realized, holy crap on a cracker that sounds just like me, its as if the words are coming straight out of my mouth and somehow ending up on that blogger's page. That was a good feeling, knowing that I wasn't alone, that other people feel the same exact way I do. I'm hoping that in writing about my bad times, my good times, my struggles and my triumphs, someone else reading will feel a little less alone. Also, writing is a really good outlet for me so it is not completely unselfish!

Okay so now down to the nitty gritty of it.... you get the Rheumatoid Arthritis part but whats with the Alphabet Soup part? Well I feel that my family and I have turned into alphabet soup. Between us all we have RA ,OCD, ADHD, PTSD, TBI, NCG and the list goes on....yeah we are a fun bunch. My daughter and I are just the results of horrible genetics mixing, my husband, well he served our country and he is paying the price for it.

So there, my first post! Now I can decorate!!