England Guest Blogger

Name: Jodie
Age: 21. Nearly 22.
Where I live: England
Conditions: Fibromyalgia, Partially Prolapsed Disc, Depression, Anxiety, Stress, IBS (Bowel and Bladder), Migraine, Sinusitis, Suspected Gastroparesis, Insomnia...need I continue? xD

How they effect my daily life: Constant Pain. Suicidal Ideation. Panic Attacks. Anger. Can't eat properly, sleep properly, relax properly. Makes me prone to aggression. Makes me vomit for hours on end.

My medical care: Intermittent at best. Diabolical at worst.

Do they treat me fairly? Questionable. Up until the last couple of years, I was pretty much written off as a hypochondriac with mental health issues. Had to be suicidal before they put me onto anything stronger than OTC painkillers. I literally asked my own mother, at three in the morning, to crush all my pills into a glass of water and let me drink the lot. That's the point I got to and it STILL took months before any actual progress in my diagnosis was made despite me being with the local Chronic Pain Team since 2008/9. Even with my diagnosis, after a few months I was deemed to be able to cope on my own for the most part without any outside support and I was informed I had made one of the quickest 'acceptances' of my situation they'd ever seen. I'd been suffering for eight long years with no straight answers. Just theories and excuses-the relief to hear the words 'You have Fibromyalgia' was unimaginable.

Any unconventional treatments you use? Wouldn't call them 'treatments' in the traditional sense but Alcohol and Smoking are two of the main 'consistencies' in my 'personal' treatment plan. Judge me all I want but it's the sense of control I get from them. I can decide to have a drink or have a cigarette whereas I don't get to decide on the mind altering agony and distress my conditions cause. I also taught myself to walk again by going out with my friend and her two year old son. At first, I'd have both of my crutches but would pop them on the pushchair and use that to support myself, then I dropped it to one whilst still using the pushchair to support myself, then I'd leave them in the car and only use the pushchair. Then one day, my friend's little boy wanted me to hold his hand as he toddled around the town. Seriously, you can't say no to this little guy's face so I left the pushchair and went to take my stick...he pushed it away and just told me to hold his hand. He'd stop and watch me walking and stopped when it seemed like I needed a break but he'd encourage me to 'toddle' with him, squealing encouragement and babbling away happily.
If it wasn't for him, I'd probably still be struggling to walk without aids. Sure, sometimes I need my crutches or my wheelchair but it's less frequent. To be honest, he was more use to me than the months of physical therapy I'd been through. He had no reason to criticise or make me feel inadequate-I'm just his Aunty JoJo with the funny legs that needs some help sometimes.

What hobbies or activities are you still able to do? Reading, Writing, Studying and Researching. That said, I'm no where near as competent as I once was. I find it difficult to concentrate, fall asleep easily and find it hard to find the drive to do any of them anymore...which is most definitely an issue at college.

Any advice to our readers? Try Cymbalta. It has been a miracle drug for me. Obviously, I know drug treatments are a minefield for Fibromyalgia patients as what works for one won't work for another but what have you got to lose? And Domperidone. I'd still be living off Pickled Onion Monster Munch, Peperamis, Strawberries, Mini Iced Ring Doughnuts and Pepsi without it.

Anything you'd like to add? Try and accept that life isn't going to go back to the way it was but do not for a MOMENT let anyone make you think you're not allowed to grieve for what was and what could have been. You are effectively suffering a bereavement. The loss of your former life for your present life. It's going to be hell, and there are going to be some days when your brain is telling you that enough is enough, but if there is anything-anything at all that can make you think 'You know what? Let's see how tomorrow is' even if it's just a bacon sandwich the next morning or a chat with a friend, try and hold on to it.
If it's still bad in the morning...I understand.

Guest Blogger Jamie Crawford Tells Her Tale

Hello! Some days I feel like I am 70 other days I feel 4 but I am only 31. If I could remember my name I would tell you, oh wait it is….ummm…oh yeah…Jamie. I am a Wifie to the most amazing man, Bonus Mommie to three incredible children and three precious grandchildren. The last time I checked I lived in Peoria, Arizona. I am sure you know what I mean in just trying to remember your name let alone your date of birth or which house is yours especially on the days when your fibro fog is so intense you do not remember what you did an hour ago. I hope I can finish this blog post before I forget what I was doing.

So what is wrong with me? Well, I landed myself in the hospital for 22 days in 2010 due to spinal meningitis. Now two years later I have fibromyalgia, multiple scoliosis, restless leg syndrome, chronic headaches and migraines, anemia, insomnia, Hashimoto’s thyroid condition, and a few other issues on the side. They do not know where I got the spinal meningitis nor do they know why I have had these issues as a result. As of recent, I spent five days in the hospital that resulted in two units of blood, two bags of iron, vitamins, antibiotics, and fluids. Now, they do not know why I am losing blood nor what could be causing the iron deficiency. Regardless of how I got here I am here and learning each day to fight my fight.

I commonly get asked if I work or better yet why do I not work because I do not look sick. I have not returned to work since I was hospitalized in 2010. I am officially “retired”. I am lucky enough to be a Mommie and Wifie who does not have to work full-time. I do own Kelly Kreative which a marketing and public relations company and recently started Kreative Girl Designs which a kreative design company focusing in jewelry, hair bows, and tutus. I also write regularly and am looking at expanding some of my work even more. I am simply not able to work time in the capacity I was prior to getting sick. I go through more days of “sick” than not. Most people do not understand what it is like to go from working full time plus living the life that I thought I wanted to suddenly have it all end in the blink of one eye. However, looking forward I absolutely love my life (minus not feeling good) and am so thankful to be where I am now.

In looking at my medical issues, they have impacted my life in so many ways. As many of you know battling with the same conditions I do that each day is different. I have my great days and I have my days I would rather go to sleep for a long time. I have stopped four wheeling, riding quads, and even working out. I do yoga as much as I can because I have noticed a positive effect when my restless leg syndrome is really bad. I do push myself to keep up on household chores like grocery shopping, cooking dinner, and laundry. We do still like to travel just accept that I will need a nap or five and a few extra days to recover from the trip. We do not always make plans but rather go day by day, one so I do not disappoint others and to allow myself to heal rather than be upset if I cannot do something. I am very blessed with a Hubs who understands my fight and is supportive. Life has changed a lot from my wild days.

Medical care is a completely different story. When I “retired” I lost my health insurance. In Arizona, I do not qualify for state health insurance because I do not have a biological dependent child. So, I have gone two years without health insurance. So, my medical treatment is my usual pain management appointment to show that I am disabled and the cheapest medication. I am not treated differently because of my conditions but rather less quality treatment because I cannot afford the good stuff. Luckily that has changed. I now have health insurance and my medicare is starting in March. I am slowly adding in new treatment based on all my conditions and what is most important at that time. I have an incredible pain management doctor, Dr. Abram Burgher. In addition to my pain management I also see an awesome doctor, Dr. James Tuggle. He focuses in the utilization of vitamins and minerals to assist in my daily living. He is actually the one who figured out I was losing blood. I have been seeing him for years for vitamin therapy via injection. He has done a lot of work with me on hormones, vitamin deficiencies, and “non-traditional” treatments. It has made a huge difference in my life. Finding a great team of doctors really makes a big difference.

Although my battle is young compared to most I would say to those of you who struggle to keep focused on the good things. Make sure you develop a supportive network so when you have your bad days you have someone to lean on through those moments. Take the time to find doctors who understand your struggles and are willing to listen to you. Yes, there are doctors who listen to you and treat you as needed not just based on paper. If you get a bad feeling from a doctor do not continue your appointment or do not go back to them. (Ask my Hubs, I walked out of one doctor’s office because she refused to listen.) Be willing to read, learn about your battles, treatments, ideas, research, medication, therapy, and so on. I go to the doctor with a list of ideas or questions. I question everything. Remember that you are not alone. This is a true fight. If you need someone to talk, reach out to someone special (or me). Also, push yourself. I know you push yourself every day. Find something to push yourself on or for because it helps give you purpose.

I hope you laughed while jumping on board my mind for a while. I am always around to ask questions to or to talk to. I will be thinking about you!

Xoxoxo!
Jamie Crawford
Google talk - missjamiekelly@gmail.com
http://myimaginationpain.blogspot.com/