Oh boy, I hate this part. Talking about myself is not my favorite thing. Let’s see if I can pull this off without being too long or making it sound like an online dating profile. I am a divorced mother of 2 teen boys (hereafter referred to as Big Bear, 18, and Little Bear, 14) who have refused to let me use their pictures or their names on this blog. SO supportive, LOL That means we just can’t tell them. I also have 4 fur babies that you will probably hear a lot about. Macy is a 7-year-old pit mix, Charlie is a 2-year-old Bernese Mountain Dog, Sophie is a teeny, tiny 4-year-old Pomeranian. and finally, we have Sylvester, who is a 2-year-old cat who thinks he is a dog. More on them later. Seriously, I just deleted 2 paragraphs. Lol My hobbies include hiking, kayaking, fishing, crocheting, knitting, coloring, doing puzzles, horror movies, going on road trips, and basically doing anything fun. Not many of these are possible for me right now. I am a little crazy, a lot silly and possibly sarcastic.
My fibro story started in the summer of 2016. I will try to keep it short but could be very difficult. I was working part time and going to school full time to get my Bachelors of Arts in Elementary Education. I planned on going on to get my Masters in Special Education. I had been a TA in Special Ed classrooms for 4 years before going back to school and loved it. I have always been involved in working with those with disabilities. My sister has Down Syndrome. I had a busy and stressful couple of years since THE EX and I had separated and divorced. Anyway, that summer I had a flare-up of Plantar Fasciitis. I had experienced this once before and it went away after a series of 3 cortisone shots and a summer of rest. When it started back, I was in the best shape of my life. I had been walking 4 miles a day, 4-5 days a week. I was stressed but my depression was good. I was getting ready to enter my last semester of school before student teaching in the spring. After several failed attempts at treating the plantar fasciitis I was put in a boot. This proceeded to mess with my lower back and hip. I was now in pain all the time. I cannot take NSAIDS like ibuprofen because I had gastric bypass in 2011. I cannot take aspirin because of a sensitivity. The only method of pain control I had was to sit on my heating pads. I had started swimming when I couldn’t walk and lo and behold my upper back started hurting. It was awful. I hurt all over. A wonderful physical therapist that I was seeing kept telling me that there was something going on with me besides what my Drs (Podiatrist, Orthopedic Foot Specialist, Orthopedic Back Specialist) were seeing. She recommended I go see my GP who she knew was awesome.
So when I went to see my GP I had the following complaints all corroborated by my PT: foot pain in heels and soles; hip pain sometimes going into my thigh and foot; lower back pain; upper back pain; pain, numbness and tingling in hands and feet; weakness in both arms and legs and it switched sides and leading to several falls on my part when my legs gave out; inflammation including swelling and heat to the touch in hands, feet, and hips; muscle aches all over like the flu; and exhaustion. Quite a list….huh? So he diagnosed me with fibro on the spot, and said he suspected something autoimmune such as RA or MS. He ran almost every blood test known to man. He scheduled me follow-ups with a rheumatologist, and orthopedist he liked, and a neurologist.
Skip forward a few months and we ended up with this: Rheumatologist confirmed fibro and diagnosed early degenerative arthritis without doing any further testing other than a physical exam including tender points; Neurologist did CT and Nerve study and diagnosed pineal cyst, increased intercranial hypertension, and neuropathy; Orthopedist said arthritis in lower back, didn’t look at anything else; Sleep Dr who I had seen for years for my sleep apnea diagnosed narcolepsy. I could not complete my student teaching because I could not stand more than an hour without extreme pain in my feet and lower back. My school let me take one psychology class from home by Skype and graduate with the degree but no teaching certificate. Very helpful. I was now in bed almost all the time because the pain was so bad and I had nothing to take for it. I didn’t even get to walk the line at my graduation. My GP was treating my fibro because I trust him totally and the Rheumaologist was less than impressive and my insurance didn’t cover anyone else any good. My Neuro and GP still suspect there is something else going on so I have routine bloodwork and MRIs to check on everything.
Now it has been a year and a half and I have been reduced to working one day a week or so from home. I have filed for disability but was denied, appealed, denied, got a lawyer, requested hearing date, now waiting a year for a hearing date and we are 2 monhs in. Sorry I am zipping through this but I am trying not to dwell and I am sure you get the gist. I have been through every fibro med and am now on Lyrica and Cymbalta for that. I still have extreme pain every time the weather changes which is every 15 minutes here in East TN. I am in bed from back pain and on heating pads all day. My skin on my back is discolored and horrible from the heat. I try to do aquatic classes at my gym which has a therapy pool but during flares this is impossible to leave my bed. My sleep Dr has been through all the Narcolepsy meds but one and cannot do it because of the Lyrica and Cymbalta. I am afraid to try and come off them. Sleepy is better than more pain.
So here we are. Sorry that was SO long. I am trying to keep my spirits up but as you know that is not always possible. This blog is a way for me to keep from going insane from boredom and to try and help others. I hope you enjoy it. Feel free to ask me any questions you have as I know this bio was mostly broad strokes. LOL