Welcome To My Life: Back To School

Welcome To My Life: Back To School

Back To School

Well, today was the boys first day back to school. I made it. It was a crazy busy day. I had to get them off to school, deal with the dryer people, clean house, cook supper and clean the kitchen, get Jared from football, take him straight to the doctor in Seymour, bring him home and feed him, get all his football equipment washed and ready for tomorrow, make sure everyone had showers, clothes laid out for tomorrow, and homework was done. May not sound like a lot for most people, but for the life of a lupie, it was exhausting!! Tomorrow will be ok, but from 3:30 to 9, it will be crazy again. I forgot how chaotic my evenings were during football season. You would have thought I would have remembered that one. Thursday I have to drive an hour and a half to see my Lupus doctor and drive to Seymour for an eye exam. Back to back. Friday evening is the first game. By the time Saturday gets here I will want to die! LoL I can't go at this pace for long, or I will be down. Literally. My Lupus is very apparent right now. I am broke out in a Lupus rash on my face. It looks Horrid!! I look like a freak of nature. Seems each rash is worse than the last. I have been breaking out on my thighs this time as well. Which is a new development. I dread the appointment Thursday. Lupus doc won't be happy. am just starting to come to the realization that I am never going to get any better. This is as good as it is going to get and I am never going to be what I consider normal ever again.

Summer's End

Well, Summer's end is drawing near and I am not even close to the shape I thought I thought I would be in. It was a bad summer for me where the Lupus is concerned. It was too cold at he beginning of the summer to get into the pool. Well, maybe not to cold outside, but too cold in the pool. Water wouldn't warm up. Then it was too hot to walk to the pool and the water was too hot from high temps and no rain. Needless to say, I got no water therapy this summer. I usually spend all summer in the pool working my butt off to get back what I lost over the winter. I hate to see what this winter like. am already starting off at the bottom instead of the top. (My physical scale. Scale I use to measure how well I am doing physically and health-wise.) I have to go back to he secialist next week and really do not want to. He is not ging to be happy. I know he is ging to want to start physical therapy and just can not afford it. I am at a point where just want to give up and let the powers that be have their way. every so often get in my head that maybe I need all these meds and all this crap to survive. I KNOW I do. I am not stupid. Call it wishful thinking, call it fatigue with the stuation in general,  call it stubbornness. I don't know. You get tred o living like this. Sometimes you think maybe it's mind over matter. That if you just think hard enough that you are fine, that you will be. Granted, none of this seems really logically when you look at it from  "normal" perspective, but these are the thoughts that run through someone's head who has a chronic illness. Anyway, a just really bummed that the summer ending and I am not in a better place physically. (FYI...Lupus and RA DOES affect you physically!!) Now that summer is almost over, I have to come up with a new plan of action. Wish me luck!!!

30 things about Me

I saw this on a friends blog and I liked it so here goes.

1.The illness I live with is:

Lupus, Rheumatoid Arthritis, Psjogren's Disease, vasculitis, Polymiositis, CFS

2.I was diagnosed with it in the year: 2001

3.But I had symptoms since: 1998

4.The biggest adjustment I’ve had to make is: Learning my boundaries–

5.Most people assume: That I will die soon or that I just want pity or that am full of crap because I do not look sick and I hide it well when I want to!!

6.The hardest part about mornings are: Functioning. I am stiff and sore and wake up as tired as I was when I went to bed!!!

7.My favorite medical TV show is: Grey's Anatomy

8.A gadget I couldn’t live without is: not a gadget but My doggies, iced sweet tea and my kids

9.The hardest part about nights are: Not being able to go to sleep because my legs hurt so badly and the fact I can not sleep through the night.

10.Each day I take _9_ different prescriptions plus 3 shots weekly

11.Regarding alternative treatments :  not big into those

12.If I had to choose between an invisible illness or visible I would choose: not a fair question

13.Regarding working and career:  um — Trying to make a career out of something I love... Photography. Its something I can do that physically wear me down.

14.People would be surprised to know: that some days I think it would be easier and better for everyone to give up

15.The hardest thing to accept about my new reality has been: the good days are few and far between and my limitations seem to grow all the time.

16.Something I never thought I could do with my illness that I did was: lose so many friends

17.The commercials about my illness: What commercials? There is not enough awareness, media, press, anything about Lupus. would like to see Lupus awareness reach the same heights as breast cancer!

18.Something I really miss doing since I was diagnosed is: walking with the boys, riding bikes, sitting outside and just being outside in the summer! and it NOT making me sick!!

19.It was really hard to have to give up:  life as I knew it..

20.A new hobby I have taken up since my diagnosis is: twitter, facebook, crocheting, Photography started out as a hobby and turned into a profession.

21.If I could have one day of feeling normal again I would: Go on vacation somewhere for a week! Take the boys to florida and go to all the amusements parks and lay on the beach in the sun.

22.My illness has taught me: What is important and what is not in life. and that drama is not necessary and will make me sicker. I try to avoid any and all drama. another thing have learned is making sure can function and feel as good as possible is more important that hurting someones feelings because or
Go somewhere.

23.Want to know a secret? My family and friends that turned their backs on me when I needed them most CRUSHED my spirit and did irrepairable damage to me. its hard for me to trust people anymore. And people treating me weird when they find out I am sick it just makes it worse.

24.But I love it when people: Treat me nice, no matter what. And truly act like they care about me and my family and act like they are always TRULY glad to see me or talk to me.

25.My favorite motto, scripture, quote that gets me through tough times is: I have fought the good fight, I have finished the race....and...That which does not kill me only makes me stronger.

26.When someone is diagnosed I’d like to tell them: You are not alone, do whatever you have to to take care of YOU, and ask for help.. it’s ok

27.Something that has surprised me about living with an illness is: how Easily I tire and how much pain I am always in… it can be so debilitating

28.The nicest thing someone did for me when I wasn’t feeling well was: come to my house and cook supper for my family and make sure the house was clean and the boys had their home work before they went home.

29. the reason I am doing this is so others can learn more about me and how the disease affects me and maybe not feel so alone in this world!

30.The fact that you read this list makes me feel: Grateful that you took the time to read and hopeful that you are more aware

Reason for this Blog

Since the day I started this blog, I have had reservations about it. have tried to keep my disease out of the public eye as much as possible in an attempt to appear "normal". Reading a fellow Lupies blog has helped me realize its time stop being ashamed. It's time to stop being afraid of losing more friends. Most of which are already gone, btw! I NEED my place to vent, to share, to hopefully comfort or inspire another Lupie. Or maybe even just educate someone.  I have been so afraid of who will see this, what they will think. So I have posted rarely. I have been judged A LOT since 2001. Until my DX, was treated as a hypochondriac by friends and family. Like it was all in my head. Now I am treated like I have the plague! Like I am contagious, or pathetic. If I hear, "But you don't look sick" one more time think shall scream. When people find out I have Lupus they ask me what symptoms I have, how I found out I had it....once I start explaining it, their eyes glaze over and lose them half way through the explanation. This is why I keep quiet about it with strangers. Or people decide want to know. Which is a lot of people. On facebook I have to maintain a professional appearance due to my photography business. Twitter is where I can be myself and not that sick person. I can laugh and joke and just be me. so m going to start posting regularly on here from now on. I am not afraid any more. care who reads it. live in fear of being judged the rest of my life because the fact is, they will judge me anyway. with OR without this blog!!  So, I hope to help someone in some small way. Even if it is only myself. loL

The Joys of Spring

Well, spring is arriving and so is the rain. And so is the pain. And stiffness. And fatigue. And the desire to just give up! We have had so much rain the White River is 5 ft ABOVE flood level. I would seriously love to understand how exactly rain and humidity affects our bodies and causes all of this pain. I am well aware Physicians knows this occurs, so why on earth hasnt someone invented a medication to counteract this horrible side effect of nature???? I have a whole bag of meds to counteract other side effects of Lupus and RA. The reason gripe, is because am hurting so badly and so stiff every movement I make is utterly painful. My muscle relaxers and pain meds are not working! Rainy periods have always been the downfall of me. Unfortunately, have a lot of money so I can not afford to move my family to Arizona, although that is what I would like to do  at this point. will be starting a new drug tomorrow Called Enbrel. If any of you have or is using the drug please let me know how your results from this treatment have been.

Another year has come and gone....

Merry Christmas to those who read this.  It has been quite a while since my last blog. i had a fairly decent summer. Best 3 months i have had in almost 3 years.  The Lupus is still active. i have periods of "flares" that are worse than normal, but my disease still has not went into remission.  I keep wondering if this is as good as its ever gonna get.  I am tired of the shots, the IV's, all of it. I had to have knee surgery in October and i had to take a break from the shots. I still cant seem to force myself to take a shot every 5 days.  Between that and stress, that could be why i have been in a flare for the past 6 weeks or longer.  Do you ever just get to the point though that you think the side affects of the drugs are worse than the disease itself???  God knows I do!

With Christmas coming up, it makes me refelect and look back on the last year.  It seems i have been in a stall pattern for a while.  Like I am just trying to survive. And as I have done this, my children have gotten a year older. Gotten a year closer to graduating high school. I dont want to just survive anymore. I want to live. Or at least feel like i am living and enjoying life! But how do those of us who have an aggressive form of SLE do that?     I think maybe because my summer went ok, almost wonderfully, it gave me a taste of what i have been missing.  Why cant it be like that all the time?  The best Christmas present anyone could give me is normalcy.  I almost feel like the Lion and the tin man from the Wizard of Oz. LoL  I keep waiting for God to show me what it is I am supposed to learn from having this disease, what I am supposed to do to make something positive come out of it.

Well, thats enough self pity and reflection for a while. Thanks for listening and i hope you have a truly wonderful Christmas!!!