This wasn’t part of my life plan!

Wow I hope some day, some way I can get back to my personal/professional development plan. Before all my health issues took a turn for the worse I was fortunate to have been blessed with a wise mentor who filled me with the knowledge of being balanced in life and when one area is throwing off the balance by requiring more time, attention and focus everything around you adjusts whether positive or negative. I worked hard to get to where I was and enjoyed serving and respecting those that I had the fortune of being blessed with coming into contact with, loved it!

I suffered for years of subpar care but never felt that any doctor cared. I’ve had lifelong problems of chronic daily migraines, fibromyalgia, endocrine problems that never got diagnosed and many skin disorders. I had doctors ask me if I had lupus but never anything more than a question. I had suffered from renal problems…

Last year, after many years with the same MD in the same system I decided to change doctors to one who was closer to home. At this point, I felt like I should be making burial arrangements not weekend plans. My seizures had increased in frequency, my pain was everywhere, the brain fog short term memory loss worsened, and my skin continued to have issues along with chronic uti’s and shortness of breath with activity. My osteoporosis had gotten worse with more compression fractures that also coincided with my z and t scores. The endocrinologist was baffled as to why I would be asymptomatic and have my blood sugar drop resulting in having grand Mal seizures.
This new doc was able to look at my records since it was all available with the electronic medical records! Wow, he cared took time to listen and wanted to do some further studies. On my followup visit I was diagnosed with SLE, RA, fibromyalgia, osteoporosis w multiple fractures, anemia, Raynauds, neutropenia, glaucoma, nausea, vomiting, brain fog and memory loss.
This doctor set up all the appointments with the needed specialists and kept them together as my treatment team. They advised me after months that it was time to file for disability. That was a blow! I had a life plan that didn’t include this let alone have time.
My life was confined to my bed this winter, electric mattress pad with an electric blanket. I was a hot pocket! Depression and anxiety made everything worse. I couldn’t write with a pen or pencil because my fingers didn’t have the dexterity. It started to where I began dropping my drinks because my hands weren’t doing there part. I found I couldn’t use a can opener, what? I was 43! I started requiring more assistance and workarounds. I required a nap after a bath. The methotrexate that’s supposed to help, I didn’t know if it was or not. Too scared to not take it and have symptoms get worse. I was well into the Remicaide infusions, again not noticing over night improvements. I think I was wanting a fairy God mother with magic pixie dust to end this story with a happy ending. I appreciate all the help and support that my doctor, treatment team, and all the staff that make the daily operations possible. I’ve filed for retirement disability, even though I’m only 44, I’ve applied for social security disability which I haven’t heard back from. I follow the recommendations and make sure I have and understand why I’m taking or need to take something different. I always have a friend go with so they are able to also hear and answer questions that I forget the answers to. I record questions and have someone write them down that I don’t understand or want more information. I know at one point the shortness of breath was hard to handle. The intranasal sores and oral sores became painful when I had to struggle to mouth breath. Trying to cough the junk out of the lungs was so exhausting. I have open lesions on my hands and than the lupus flares I normally get on my face or torso, front or back. The doctors have recommended that I find a way to move to the south before next winter, south of Orlando were temperatures are more consistent. I don’t expect a miracle and I understand my life plan was wrote in pencil for a reason. I watched the movie Finding Normal on many occasions and know that my plan might not have been Gods plan. I have 2 daughters that I’ve been blessed with. One will attend a Big 10 school in the fall but my younger one is due to be a high school freshman. She suffers herself with the residuals from having Lyme disease that went undiagnosed for months. She also can’t tolerate the cold and has limited social interactions because of it. She suffers from fibromyalgia, swollen, painful joints and had to fight a long hard battle this winter to overcome mononucleosis. The doctors believe this is also in her best interest.

Our plan is to relocate, set up, have a treatment team in place and do the best we can following his plan paying it forward. Many blessings!

***Edited by moderator due to mention of personal fundraising***

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