A Chronic Voice Linkup: Neurology & Rheumatology
My Story of My Chronic Illness Journey Continues
Another step in the journey of taking back my health or rather battling my body for my health. Timely since this May which is awareness month for many of the issues I struggle with. The linkup over at A Chronic Voice also tied in. I definitely feel like I have to be a private investigator to stay on top of my health.
I am not alone in feeling like a private investigator “I think that many of us who live with chronic illnesses often feel like private investigators or scientists. We’re investigating the latest biologic drugs on the market, observing the side effects of yet another new medication, or pouring over our blood test results for some clues. We experiment with treatments, supplements, machines, or anything that might bring pain relief. We’re checking out a potential specialist or surgeon, and who knows what else! Of course, there are many other interesting things in life to investigate as well, which I’ll leave to your imagination 
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Referral to Rheumatology
Received a referral to rheumatology today. No idea which blood tests last week prompted this new referral. It has me kind of freaking out I admit. It could be something so simple but left to wonder of course my mind is going to worry. Updated to say that the rheumatology referral is for my G.P’s belief that my results show a strong possibility of Lupus (SLE).
She did write a diagnosis of Chronic Fatigue Syndrome on my records.
Since February my physician and I have been discussing the likelihood that I have Temporal Arteritis. This is why she has referred me to neurology.
Back Story
If you haven’t been following before this you are unaware that my autoimmune disorder is already continuing to grow and frustrate me.
In January I was diagnosed with Microscopic Colitis. Previous to that I have been under care because I have Sleep Apnea, Severe Osteoarthritis, Celiac Disease, Depression & Anxiety.
So I am taking some time this week to regroup mentally and physically. Okay, well this week looks busy to be taking a rest. So I am regrouping by making a new plan. I need to make sure I am getting enough physical activity without overdoing it. While also making sure I take care of my physical body. Currently I am trying to actually write a new strategy plan to fight back against these autoimmune disease attacks on my body. This involves making a plan to manage my pain and fatigue enough so that I can function in my daily life. I am setting up a new plan with a new routine to help me be the best of me I can be.
Blogging Through It All
I am going to continue writing as it is a habit I always enjoyed and I recently revived it from my list of things I never made time for.
I am going to do all I can do to give my body the boosting that it needs to fight back against these autoimmune diseases. One of the things that boosts me mentally is being able to write and all of the encouragement I have received from fellow bloggers. Especially those in the chronic illness niche. They have been more than welcoming, helpful and understanding.
Rheumatism
May is awareness month about so many issues that I struggle with. Celiac Disease, Colitis, Lupus, Arthritis, Asthma, Mental Health issues, and vision problems.
Regarding Mental Health awareness “One in five people in WNY lives with a diagnosed mental health condition, but only 40% of people struggling with these issues seek help. ” according to WGRZ.com. Many of these people are not getting help because of the stigma attached to mental health. Join care2.com and help us fight the stigma. I know I myself avoided help for a long time because of the stigma. Now I have the strength to stand up and advocate for those who can’t.
My Posts about IBD/ Celiac Disease Research Foundation Fundrasier can be found by clicking the tag Celiac in the sidebar.
There are some really great bloggers in the chronic illness niche. If you poke around under my post about the sunshine blogger award and the disability awareness blog post that will give you a start on where to get more information. As brainfog is coming in I am ending this post here. I hope you found some useful and relevant information. Have a great day.
I am on the same path, we definitely have to be our own private investigator and self advocate! I thought for sure I am dealing with CFS/ME. For a year Ive tried to get into a Rheumatologist. No one will see me when I mention CFS. My referral ran out, got it renewed and when scheduling an appt this time I left out that word and only said to be seen for ankle and wrist pain which I have been dealing with for 20 years. We shall see how the appointment goes in two months of a wait. Thanks for the post!
Hi, thanks so much for joining us at the #LMMLinkup community. Your resources that you share are invaluable. I can’t wait to read more of your posts. We share the same struggles. I hope we can meet on Facebook and support one another.
Great to read your thoughts on these prompts! I hope that your visit to Rheumatology will bring you results that are quick and certain. I know that this can be a longer journey for most of us. Hoping you get a terrific doctor~
You are absolutely correct that all the patients of autoimmune diseases eventually become private investigators that involve not only to find out which treatment works better for them but also the triggers that trigger the pain or discomfort, which is very important to effectively manage all the pain and discomfort. Best thing you have done is you did not give up on your passion i.e writing.
I have seen many patients turned again towards their passion and they ended up feeling better and manage their pain more effectively.