New Here......: I am hesitant to post... - World According t...

World According to Lupus

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New Here......

Dog_mom profile image
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I am hesitant to post because I have been betrayed and belittled in previous "support" groups. But here I go.....

I just turned 29 on June 3. I was officially diagnosed in March 2015 with Lupus, Sjogrens, pleurisy and Fibro, chronic pain and fatigue. I have dealt with "something medical" since I was 9 but no doctor could diagnosed it. And they are still exploring for more... I had all of my teeth removed earlier this year and wear dentures due to the years of misdiagnosis of Lupus and Sjogrens.

Oh yes and I also have chronic chest pains that aren't cardiac related. Also have severe tachycardia not related to anxiety.

I also suffer from depression, anxiety including panic attacks, and I have a history of cutting. I have little to no self esteem and tend to be very negative.

I have no support system. No one understands or believes me. I have a lacking of trust in people and am losing the trust I have in my doctors.

If I don't comment on posts or seem like I'm not being supportive, it's not because I'm self centered (far from it), it's just that I don't know what to say or I am not in the right mind set to offer support or I feel I don't have the life experience to offer support.

I am just really struggling with wanting to continue medications and appointments. I just don't see the point in it anymore. I am just tired of it all. Nobody in my life understands or believes what I am going through.

I live my life for my dogs. If not for them, I don't know what I would do.

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Dog_mom
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Pixiellama profile image
Pixiellama

My heart goes out to you, and all you've been through and are going through. 😢

I was diagnosed with lupus in 1994 when I was 13 years old. But I had already been suffering of it since the age of 7 or 8. I was tired all of the time, all my joints hurt excruciatingly. I was diagnosed with reynaud's and the malar rash. In later years, pleurisy and periodontal disease. Then diagnosed with a degenerative eye thing I can't remember the name of, probably from the meds I was prescribed. And then in 2017, I was diagnosed with Itp. Idiopathic Thrombocytopenia Purpura. Due to Lupus, inflammation to the spleen, attacking platelets causing a low platelet count. Danger of bleeding internally and externally. I just recently was released from the hospital after almost a 3 week stay. 3 visits, 6-7 days each. My nose kept bleeding. They had to put rhino rockets in. And gave me platelet transfusions and ivig/immunoglobulin.

I know the feeling of losing all hope. When I was in the hospital, the first couple of weeks, I completely lost all hope. And it's a scary and disjointed feeling. Just feeling so separate and secluded, like the world has forgotten about us, and people go on living as we are stuck in the darkness of our disease.

Please know that I am here for you if you want to talk. Just msg me. 🤗