Posted by: hockeygrl1 | October 3, 2012

On my 5 year anniversary of my diagnosis – What I’ve Learned

Here it is the 5 year anniversary of my diagnosis and my first stay in the hospital with lupus.  It has been a long 5 years with a lot of ups and downs. I’ve defiantly learned a lot.

You learn who your real friends are once you become seriously ill.  Some are there rallying at first; calling all the time, saying they will come help with dinners and things, but in the end it’s the true friends that do this. I’ve come to the understanding that some people just can’t handle it. I don’t think I know all the reasons why, but I know for sure that they don’t know how to or don’t want to talk about illness. They shy away from knowing what I am truly going through and move on to lighter subjects. My closest friends listen to all the gross details.  These friends also  come up with things for you to do that won’t totally exhaust you and understand your limits and if you need to cancel. The thing I still want most is someone to come over, bring some movies and just hang out. It’s lonely being sick.

Yes, I cancel outings. Nothing makes me feel worse than this. I’ve learned Lupus is a very unpredictable disease.  I never know how I’m going to feel from day-to-day and I frequently still over do it on my good days. Cancelling feels like giving in to me.  I know it’s not, but I was a very active person before my body shut down on October 3, 2007 and not being able to do what I used to is my greatest loss. I cry frequently about it and sometimes wish I had someone to cry with me that will just listen and be understanding, not try to rationalize it or fix it.

My body has changed. I’m rather round around the middle and I haven’t adjusted to it yet.  I still try to fit in spaces my old body could – like between two chairs or people. I don’t look in the mirror often because I don’t like the look of the new me. I feel that it’s hard enough to be ill and this is just sometimes the thing that pushes me over the edge. I don’t like my new body and having the illness running around inside it just makes it worse.  Yes, I try to look at the positives! But try being 40 and wanting to date with 2 strikes against you already. *takes deep breath* Prednisone does a number on your body and for me, it is the only drug I can use to treat my lupus so the pounds come on but won’t come off.

Yes, this is MY lupus. I’ve learned that lupus treats every body differently. IT IS NOT THE SAME IN ANY 2 PEOPLE. That is in bold because me and my team of doctors try everything to reduce my symptoms and what you’re going to tell me that your friend of a friend does, I bet we’ve already tried. I eat healthy and my team of doctors (Rheumatologist, PCP, Nephrologist, dietitian, Internist, therapist and the coordinator for all this) do not think my diet is or was the cause of my lupus. I do all I can to eat energy boosting foods to fight my fatigue. I CANNOT eat immune system boosting foods since my immune system is already hyper (That’s what lupus does). I say this because all the medical advice, although I know you are just trying to help, is not needed, thank you.

Oh the medications!

The number of pills changes with what’s going on, but it’s always at least 20 a day. Why so many? SO I CAN LIVE! They control my blood pressure which is high because my kidneys are bad and being high makes them worse; slow the damage arthritis is causing in my joints; control the pain in my joints and other parts of my body from fibromyalgia and lupus; produce saliva because my glands don’t work properly because of sjogern’s syndrome; prevent inflammation in my body because it is bad for my organs and joints; control my mood and anxiety because being sick is hard and (this may sound funny because I’m exhausted all the time) put me to sleep.

I also take an IV medication that was approved a year ago called BenLysta.

“How BENLYSTA works

In people with lupus, certain white blood cells called autoreactive B cells—cells that react against the body—stay in the body longer than they should. These autoreactive B cells produce the autoantibodies that can attack your own body in lupus.

One of the important proteins for the growth of these autoreactive B cells is called B-lymphocyte stimulator, or BLyS (pronounced “bliss”). BENLYSTA binds to BLyS and prevents it from stimulating those B cells. Adding BENLYSTA to your other lupus treatments may help reduce the abnormal immune system activity that contributes to disease activity in lupus.” *Taken from Benlysta website.

Being a mom, daughter, friend and house-mommy is all I can handle right now.  Just cooking, cleaning, and taking care of myself is enough for me to need a nap at 2 pm everyday. This is with taking frequent brakes too. For instance, I am not typing this blog all at once.  I do a paragraph and then I let my hands take a break. That goes for everything I use my hands for – reading, dishes, knitting, jewelry making, writing – I can’t do any of that for a long period of time.  Hell, my hands ache just making the grocery list! Grocery shopping is a whole other world now that I’m ill.  Once I’m finished and put all the dishes away, I’m so exhausted that my body is shaking (as it is now because I just went, but I want/need to finish this blog . I do take walks with my dog to try to lose this big belly I have, but again, there’s a nap involved. Any activity ends with a nap and if I go out, I pay for it the whole next day. Having all this time off (as some people say) is NOT a vacation.

Something I learned the hard was is stressing about my past is not worth the energy. I’ve not only been through a lot medically in the past 5 years, I’ve also lost a lot personally. It started off with my job and career. I was successful in corporate training, specifically in designing e-learning and internal assistance/dictionary websites. I had my dream job and I won’t dwell on losing it because when it is time I will find one again. I lost my boy friend.  He couldn’t handle the illness and changes in me. This hurt my self-esteem and I am working to fix it. Again I’m lonely, but when it is time, the right man will find me. I lost my house. I worked hard to own my own home and was proud of my little house by the lake. I am still working through this. I hate saying I live in an apartment in my parent’s basement. I miss the lake and the water and my neighbors. The saddest part is I can’t even go over there because of the pain and embarrassment I feel. *doing yoga breathing now* This is something I push back into the farthest part of my brain so I don’t think of it except in therapy.

I’ve learned the medical system and jargon. I was so lost when I first got sick. There is not a hand book – although I think hospitals should hand one out – for chronic illness. Finding help was something I learned the hard way. My insurance through my job wasn’t as great as I thought. It was fine for a healthy person, but with all the special tests and medications, a lot was not covered. I should have applied for medical and financial assistance right away in October, but I waited until November. It would have made a big difference financially for my mom. She was purchasing my medications that were very expensive. I am thankful for her everyday. Also, you can/need to shop around for the right doctor. The one I had at first was unsympathetic and didn’t explain my illness well and who I go to for what. I didn’t know he only was treating my kidneys, not all of my lupus symptoms. Thankfully, the Lupus Foundation of Minnesota had a list of the best doctors in MN and I found mine.  She listened to me and saved me from losing my bladder due to the chemo.

I learned that Social Security Disability is a nightmare. Getting and staying on SSDI can be a full-time job. You need to document everything and be prepared to share it all too. It takes forever – over a year – to be approved and once you are, you can be reviewed every two years.  I just went through a review and had to see a SSDI therapist. He noticed things talking to me that I didn’t document. Haha, I’m sicker than even I thought. I have an opinion that the SSDI denies you just so the SSDI lawyers have an income, but that’s just my opinion…

The most important thing I’ve learned is to listen to my body.  I know my body best and I need to trust myself to know when something is not right. I didn’t do this when I first became ill in September of 2007.  I went a month puking up everything I ate or drank and peeing brown urine. I went to the doctor and ER and they pushed the puking off as a virus and the fatigue as stress from a new job and being a single mother. If not for my own persistence and finally getting a doctor that tested for the unexpected, that I was diagnosed and admitted to the hospital. I COULD HAVE DIED! *crying* Please listen to your body and if a doctor doesn’t take you seriously, find another one. Your life is worth it and so is mine.


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