Tale of Mental Health

     So excited to be involved again this year, with the 3RD Annual RA Blog Week. This is my 2nd year, as Rick Phillips was kind enough to invite me last year. Normally my storyteller Trevor, would be sharing our tales, but I am giving him the week off. He is golden retriever, who is a great helper in having me spread awareness and hope. A little explanation about my blog. I recently became a 9 year brain tumor survivor, so that is where Brenda's Brainstorm comes in. I have lived with RA for over 26 years, but my writing started as a result of my brain tumor experience. I suddenly became creative. Just wanted to give the rest of you a little background.

RA Blog Week Day One: Monday - Mental Health - How do you maintain your mental health while dealing with autoimmune disease? Discuss how dealing with RA every day makes you emotional. Do you hide your emotions? 

I can honestly say that in the beginning of my journey of RA, all that was going through my mind, was that my life was over. I was 31 years old at the time, and this disease was progressing quickly.

That first month, I was crying all of the time. I was literally walking around in a fog. I felt like this dark cloud was constantly consuming me. I have worked in the medical field, pretty much all of my working years, so I saw what could happen with RA. I was even aware that children could get it. I worked for an eye specialist, so I saw when they would come in. I thought to myself, that would be a terrible disease to get. Here I was at the age of 31, living that reality. All I could think about, was that I probably would not be able to continue working full-time and would end up in a wheelchair. 

I even tried going to a local arthritis support group. My rheumatologist's nurse was my neighbor at the time and she took me to a meeting. I went several times, but each time, ended up feeling worse after. Listening to all of the stories and seeing the progression of their disease, was frightening to me. There had to be another way.

I have always been an analytical person, so wanting to know about this disease, and how I would be able to live with it, was the next step. There were no personal computers at this time, so my only source of research was the public library. I picked up videos on VHS, (before DVDs) and would watch them. I worked at a clinic and the Arthritis Today magazine was delivered there. I picked up an issue and would read it from cover to cover.

 An arthritis day event was held in my city, on a Saturday about a year after. I attended and learned a great deal from other specialists. The main thing I gleaned from that day, was that moving was paramount. Full range of motion exercises became a part of my daily routine. I also became a member that day, so that I could have the Arthritis Today magazine delivered to me personally.

Now on to the emotional issue. I never really wanted to talk to anyone about my RA. In fact in the beginning, I was so careful, with who I shared it with. Imagine thinking that people would think of me differently, because I now lived with an autoimmune disease. That's how I thought. Dealing with the isolation is worse than the pain and it still is, to this day.

Having had a brain tumor took care of emotions. There was no hiding it anymore. My brain tumor was located in the right frontal lobe or what is considered to be the high functioning part of the brain. It also causes me to become angry more quickly or brought to tears. It usually occurs when I see something touching on TV or someone being treated unkindly. It's in essence empathy, which I now possess much more for others and even myself. 

I cannot separate my two challenges, living with RA and becoming a brain tumor survivor. The 2 continue to go hand in hand with coping. The brain is a strange thing. Like I mentioned before, my creativity began after that experience.

My emotions and feelings have become much more sharper, if that makes any sense? I need to be doing something of worth. The challenges have both become blessings for me. May seem strange to some, but that is my ultimate way of coping. 

Something new came into my life this year. In fact, it was this summer. I was dealing with a lot of medical issues. It's not just RA, when you have RA. Anyway, anxiety entered into the equation BIG TIME! I was found to have a breast lump. All the Nurse Practitioner said, was that I had a lump at o'clock. I did not even hear the position. My mind went back to when I was first diagnosed with RA and again thought it was over. She wanted to move my 3D Mammogram up that was scheduled for September, and also to have a breast ultrasound. In all likelihood, it could be that it was scar tissue from having had a breast reduction, almost 11 years ago.

I had to wait almost a month for the initial tests to be done. I had a lot of time to think. I did not share this with anyone, outside of my medical team. I did end up with another bout of shingles, my 5th round. Couldn't help but think that this newfound anxiety, became a big part of this. At my annual physical, they did a depression screening. I explained it's more of a feeling of hopelessness at times, not knowing what is going to happen. We talked about my feelings and that I was anxious about what might or might not happen. I kept saying to myself, "It can't be everything" 

I did have the 3D mammogram and breast ultrasound and on the initial examination, it all seemed normal. Would have to wait for the final result. The radiologist agreed in all likelihood that it was scar tissue, as she could not feel the lump. Neither could I. Interesting enough on her examination, she did tell me that my lymph nodes under my arm pits were largely pronounced. She explained that this was from living with an autoimmune disease, such as RA. It always comes back to that. We talked about hormone replacement therapy and this is where the brain tumor becomes connected. I had what is called a nonmalignant right frontal lobe meningioma. While 90% of these types of brain tumors are usually benign (a word I have grown to dislike so much, because they can still be dangerous, because of their location). They can also involve estrogen or progesterone markers, so having been on the pill, for endometriosis (another huge connection with RA, will share that another time),I did not want the chance of developing another meningioma. I don't know if the pill was the cause, but my brain tumor was probably growing for at least 20 years, when it was finally diagnosed. They grow slowly and I had also been taking the pill for about that amount of time.

This is where my emotions were getting tense. She kept using that word benign to describe a meningioma. I went on to tell her that I knew of a friend who had one of these so-called benign meningiomas and had to learn to walk again. Inside I was becoming furious. My emotions were truly on edge. I managed to keep them at bay, so I would not burst into tears.

I can control them for the most part. I had a friend once who told me, "Don't fight your tears, because you will never win." I find now that expressing emotions and feelings is really okay. In fact, I find it healthier than trying to hide and remain in darkness.

Now that I know anxiety can be a trigger, I also have the power to use it to my advantage, in continuing to fight this every day battle with RA. Just a side note: My 3D mammogram and breast ultrasound, were both found to be normal. My next 3D Mammogram has already been scheduled, for next year, as was suggested by my primary care physcian's nurse. She directed me to a nurse navigator and got it set up. What a relief, that was over! 

I find that writing down my thoughts on paper, with using a journal has been my best weapon of defense. I can go back and see how far I have come on this journey. Also sharing my story as a co-author, in an upcoming book to be published soon. Real Life Diaries: Living with Rheumatic Diseases. Be on the lookout for that.

Keep Fighting!

~Brenda~