Skip to Accessibility Tools Skip to Content Skip to Footer

Living in Denial and Fear

I was diagnosed a year ago….But this is how it all started. Three years ago I was working at a very busy physicians office. I was getting different areas of pain. My left shoulder, my right knee, my left hand, my left fingers. Each time it was diagnosed as everything but RA, oh, they checked a Rheumatoid level but it was negative. I ended up vomiting almost everyday, every night, my GI did multiple tests and I was diagnosed with Gastroparesis. It is a motility issue with your stomach, takes me 9 times longer than the average person to digest my food. I had bacteria over growth in my stomach confirmed by the biopsies, later followed by a gastric study. To top it off, he said he would put me in the severe category. I quit my job due to the amount of stress he felt there was no way to get my condition under control. My private physician agreed. I kept chalking everything up to the stress and my weight had crept up through all this also. So I figured I was just over weight. A year later, I received new insurance so I need to find a new primary.

By this time I had been going through a multitude of things, still the pain, rashes and allergies. When I went to see her thankfully my left ring finger looked like a sausage. She immediately said I think it’s Rheumatoid, but let’s not jump to conclusions. She did a test that she knew the Rheumatologist she would be referring me to would do. It came back very elevated. I went to see the Rheumatologist and he confirmed the test. This was a little over a year ago. He wanted me to start Methotrexate and Folic Acid then. I wanted to try diet. Well I did! I lost 40lbs. The diet I choose was the HCG. I had investigated that because I heard that when woman who have RA get pregnant they go into remission, also there was no way I way going to exercise I could barely walk. The diet worked while I was on it of course. I still had pain but it was better I lost the 40lbs, I am not endorsing this diet you should always check with your doctor.

I might also mention that our dear friend was diagnosed with Lymphoma at the same time I was to start the meds. So I have still not started the meds. I still live in fear of the medication.
Rheumatoid has cost me my job, my energy, my attitude, and I feel like when I have a flare I am not the sweet woman every body claims me to be.

I don’t think a lot of people understand the true pain I am in. I don’t sleep well at night. My shoulders hurt so I have to shift from one side to the other. Today is a really bad day that is why I choose to share my story today.

My husband works so hard. I am looking for a full-time job. I only work 27.5 hours and that is only when school is in. I read all these stories and I am scarred. I turned 50 this year and have so many things I still want to do. I have two grandson’s I don’t get to see as often as I would like due to finances. I am angry and depressed when I get a flare, which seems to be once a month when I would cycle, if I had not had a Hysterectomy.

I guess what I am hoping to get from this is someone who understands my fear of starting the medication. I always say, “oh maybe after we go away”, or “maybe when school is out”. Excuse after excuse. I fear being crippled. I fear a reaction to the meds. I have all Autoimmune disease, the Gasroparesis, the RA, oh and did I forget to mention I got a horrific rash back in March they think that was DH from gluten!

Thanks for letting me share if anybody has anything to say please to Share.
Nora

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Mariah Z. Leach moderator
    4 years ago

    Hi Nora~
    Thank you for taking the time to share your story. I think a lot of people can probably relate to your fear of medication. However, it is important to remember that while some of the medications used to treat RA are also used to treat certain cancers, the dosages are much smaller. And while all medications have potential risks and side effects, these are not guarantees and often the benefits outweigh the risks. Treating RA is also extremely important for preventing long term joint damage. And, if you can work with your rheumatologist to find the right treatment, it can make a huge impact on your quality of life. I would encourage you to share your fears with your rheumatologist, ask as many questions as you can, and try to find a treatment plan that works for you. Best of luck and please remember that we are here to support you.
    ~Mariah~ (Site Moderator)

  • Poll