Dreams remind me…Like I really need to be reminded!

My life, almost 45 years of it, like anyone else, has been difficult. I know we are not supposed to look back. Learn from it and move on. It is hard when you dream about it! I have made wrong choices. I have loved too much and been taking advantage of. I am a trusting person. I have been second choice in the love department more than once. I have had people come back later and say they realize how wrong they were and apologize. I guess that makes me feel better LOL. Single mom.. did the best I could. I was sick a lot. Whether it be allergies, asthma, migraines… whatever. Now I know it was Lupus causing my issues. Lupus can be caused by stress to the body from LIFE! I know there are other factors too but I feel that with all I have been through this is the result. I try to stay positive and think surely this is not the hand I was dealt. It never helps to be negative. I try to live each day as positive as I can.

With the medication I am on, I have crazy, vivid dreams. This is not always a good thing. I dream about specific times in my life and relive it. Sometimes it makes me think about how different my life would be if that moment would have turned out differently. It also brings back feelings of never being good enough. Not even for myself. People pleaser. I’ve been called that more than once. I know not only chronically ill people have these thoughts and dreams. I hate it. My life has had wonderful times too… my children are a blessing. Why do the bad things always stand out. Ugh

We all just want to be appreciated and loved. We want to be recognized for the job we do at work. We want to live a life of peace. I hope that everyone who reads this has that❤️

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It has been awhile…..

My journey the past few months has been about listening to my body. Having a chronic illness is not easy but I am doing everything I can to make it as easy as it can be to live with. I have now been diagnosed with Rheumatoid Arthiritis so that makes 4 autoimmune diseases. YAY ME! My medication is now Humira. I give myself an injection every 2 weeks. I dread it every other Thursday but it seems to be working better than plaquenil and methotrexate. Before my huge flare and diagnosis, I had lost a lot of weight and inches. I was feeling amazing and more confident than ever. Now with my medication, lots of sleep and lack of exercise, I have gained a lot of it back. I was so proud of myself last weekend when I walked 2 miles Saturday and again on Sunday. It was a huge milestone. I have continued to walk more and more at work and then today it came to a screeching halt. My body aches all over … pain is unreal. It is a watch movies and write a blog kinda day. Don’t get me wrong, I feel better than I have since July, but I have learned to listen to my body. Some days I go with only 7 hours sleep. Then it hits and I sleep 12 straight. I have no control. That is Lupus. If you push it one day you will pay ..maybe not the next day but it’s coming. Usually is the next though. The fatigue is something I can’t describe. And my diseases affect my knees and hands horribly. Pain some days is unbearable but I get up, get dressed and get on with my day. If I don’t I’ll sit and wallow in self pity. If I proceed with conquering the day, I will! See Lupies  don’t want to complain… we go on like nothing is wrong because you wouldn’t understand anyway. Just what we do. We do not like to complain….

Have an amazing day❤️

Do I have to get used to this?

This being a huge adjustment in an understatement. With Lupus, you can’t just take medicine and feel better. I knew that but it sounded good to tell my family that. I have a few ok days then I’m in bed for a few.  I am now on Methotrexate, Prednisone and Plaquenil. That at least gets me to work but I am in bed soon after I get home. I wake up in the morning and it takes about an hour to know if it will be a bad day or ok day. And what is up with this cough? My throat feels like it is closing in and everything is so dry. I need a constant drink of water so I don’t have a coughing fit! The Sjögren’s is no joke! I do have a sexier, scratchier voice now (role my eyes).  This really sucks! 

Thanksgiving was nice. My son came home a few days from college. I tried to take it easy and also do some things with him. I knew if I pushed it too much I would be down for days.  I miss him so much. 

Another adjustment is realizing that while your life is at a standstill, life goes on for everyone else. It’s not that I expect people to say how are you feeling, or whatever. Well, maybe it would be nice. But people do not understand what Lupus is and how it affects you. Since it is different for everyone, they may know someone who hopefully has a normal life with it. I don’t know that feeling nor have I met or read about anyone with that experience. 

I hope that instead of this steadily getting worse like it has been over the last 6 months that I will get a break and it will level out. We can all dream!! I hope everyone had a fabulous holiday and that all my fellow Lupies have an amazing day. 

One day at a time.. 

Lupus… that is what I have, not who I am. (Lupus with a side of Sjögren’s, a little Hashi’s too) That is what I keep telling myself. But I hear it come out of my mouth. Need a nap. Can’t make it tonight, sorry. Can’t make it to work today. Vomiting. I actually got home from work and went straight to bed. Woke up and took my medicine and went back to sleep. I have learned over the past month that I need more sleep. If I work 2 days and only get about 8 hours a night, I will have to sleep more by the third. I’m learning. I’m having to listen to my body more. If I do that I will have better days. A better day lately is not having this weird headache on the top of my head. It is like knives stabbing repeatedly. Eating is a chore. Nausea is a constant. Stomach issues are never ending. I am starting to notice the improvements that the plaquenil will give but my stomach hasn’t gotten the memo. My itching is better but some nights I can’t claw my ankles off fast enough. 

So Lupus is what I have. It is also apart of me. Who I am. Even though I was diagnosed a month ago, I have been suffering for years. One day at a time it will get better, now that I know what I’m dealing with. ❤️

And the winner is…. 

Well I finally have a diagnosis or two.. Lupus and Sjogrens!! Connective Tissue Disease! Yay me!! I m glad to be able to get treates and hopefully feel better. The past 4 months as been horrible. Thanks to everyone who has helped along the way. 

If anyone has any helpful advice for my Journey now defined by Lupus and Sjogrens .. please let me know!!! 

Waiting…. 

So I am awake at 3 am… this is a result of the prednisone dose pak I have been given so I can at least make it out of bed. For the past 4 months, they have been trying to figure out what is going on with me. Well most of my life something has always been going on with my health. I’m hoping this time we will know. 

I had a Lumbar Puncture 2 weeks ago to rule out MS and so far it looks as if everything is pointed towards antibodies.. JO1, ANA and my Hashimoto’s… protein is high in my CSF but I haven’t gotten back the Obands and myelin test. I had gotten to the point last week where I was begging for some kind of relief. I was told I could have a trial of prednisone until I get in with the Rheumatologist. The day I took it, it wasn’t an hour before I felt so much better. I have taken it before for my asthma but not for the symptoms I have been having. It has been so hard because I have missed work. I started a new job in July. My health comes first but I have to have a paycheck. So I am getting nervous because my appointment isn’t for another week and a half and I have one day of prednisone left. Hopefully it will take a few days for my symptoms to return. 

I do not have anyone who understands around me. My husband is supportive to a point, but has no idea what it feels like to not be able to get out of bed. And I don’t expect him to. I am reading other blogs which has helped a lot. Especially with understanding the JO1 antibody and what that entails. I want to thank all the bloggers out there who share their experiences with the struggles of finding a diagnosis and what it is to go through the daily pain and frustrations. It lets you know you are not alone…..