My Eyes Are Open Now!

By RoyceD

1 min read

I have been a very healthy person until 5 years ago.

Finally being taken seriously

I began to think my doctor just got tired of hearing the same old whining from me. Just within the last 2 years did he begin to take me seriously! My blood work came back showing that l had either lupus or RA. After more testing, we found I have both, plus fibromyalgia, Raynaud’s & also developed collagenous colitis. I could not leave my house for almost a month. Oh, there is more, but this is supposed to be about lupus!

Searching for ways to cope

I had two very stressful days this week & ended up in bed for two days, had to go from my cane to a walker..I haven’t given up but I am very close.

How does one avoid stress?

I would love to know the answer to that question.

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GabbyFormica Community Admin
<inline-mention username="RoyceD" user-id="4704662"/>, I am sorry to hear that it took so long for you to find the diagnoses and answers you should have gotten as soon as you raised concerns! The ups and downs of living with lupus plus can be overwhelming, confusing and beyond stressful. You are not alone in this feeling 💜 Stress is a tricky beast and is something that different people learn to cope with in different ways. No two lupus journies are exactly the same. That being said, one of our advocates wrote an article about her relationship with stress and how she tries to combat it in her life: <a href='https://lupus.net/?p=4038' target='_blank'>https://lupus.net/?p=4038</a> I added the link in case you wanted to read more and see if any of it seems relevant or helpful to you. Know that we are here to listen and support you along this journey! Thank you for sharing with us. Sending hugs, Gabby (team member)
Racquel H. Dozier Moderator & Contributor
<inline-mention username="RoyceD" user-id="4704662"/> you’re dealing with some serious issues and the stress will definitely come. It’s so hard to manage the stress. I try and do a lot of meditation and honestly I have gotten to a point where I am in the mindset of whatever happens happens. It's hard to get to that point but with several brushes with death I had to resolve to just take it moment by moment. I had to start just being compassionate to myself. It may sound corny and overly positive but it has really helped me to keep things in perspective. I am sending you gentle hugs and holding space for lowered stress levels and some relief on your journey. We are here to support you and help you through understanding it a bit better. ~Racquel ~ lupus team member
hollaturgirl Member
Sometimes just and you think its getting better it start getting worse I’m been having a lot of different aches and pains lately to different parts of my body and I noticed I’m getting rashes more often especially from the heat is he been gotten to the point where if if I get a mosquito bite when I scratch them sometimes they blister and also they get a scab like a saw which is something that never happened before in the past don’t like it at all and it’s starting to leave marks on me🥺
1. GabbyFormica Community Admin
 <inline-mention username="hollaturgirl" user-id="2044384"/>, I'm so sorry to hear that your symptoms have been getting worse lately! It's so hard to avoid the bugs, especially this time of year. Lupus rashes seem to have a mind of their own and are sometimes hard to predict... I hope there is some comfort in knowing that you are not alone. Sending hugs! Gabby (team member) 
2. Ava Meena Moderator & Contributor
 <inline-mention username="hollaturgirl" user-id="2044384"/> this disease is definitely tough on our bodies and can be sneaky - especially how you said sometimes we think we're in the clear but nope, actually things are worse. Thank you for sharing your experience and I'm wishing you well. -Ava, <a href='https://lupus.net' target='_blank'>lupus.net</a> team
Nuthinbutlove Member
<inline-mention username="RoyceD" user-id="4704662"/> it's interesting how we are supposed to avoid stress when we have a disease that causes so much stress. Unfortunately I don't have an answer for avoiding stress but one thing that may help is making sure you are talking to someone about the way you feel. I know it feels like you are complaining but holding your feelings in just makes things worse. Hopefully you have someone empathetic that you can trust, if not we are always here. ❤🙏🏽 
1. GabbyFormica Community Admin
 <inline-mention username="Katam" user-id="4520426"/>, Avoiding stress is so much easier said than done! Especially when your body isn't cooperating the way you want it to. Finding someone empathetic in your life that you can trust is so important! Thank you for sharing and supporting this community! Gabby (team member) 
2. Ava Meena Moderator & Contributor
 <inline-mention username="Katam" user-id="4520426"/> this is a great point. Most of my stress is caused by my poor health! For example, I can't do chores around the house when I'm flaring so it creates more stress for my family and thus me. And of course the finances of lupus - so stressful. It's hard to recover because the flare-stress-flare cycle is hard to break. Thanks for sharing this great advice; you're totally right that talking can help us so much. Whether it's sharing stories on this community site, talking with a friend, or making an appointment with a therapist, there's so much relief in letting it out. I really appreciate your empathy and encouragement! -Ava, <a href='https://lupus.net' target='_blank'>lupus.net</a> team