Well, I am a fairly new fighter although the doctors have explained that I have had this disease for several years. The MRIs and bone scans indicate that the damage to my hips and spine began approximately 4 years ago.
I was blessed to spend those first 3 years fairly pain-free. At least, pain-free enough to forego any type of special appointments for pain or mobility issues. My first appointment for joint pain was with my family physician in February of this year, about 4 months after opening our home to the most adorable set of 2 year old (foster) triplets. I honestly thought the knee pain was caused by crawling around on the floor with the babies and forgetting that I am no longer a teenager.
Within days of my visit with “Doc”, I tripped over one of the triplets and dislocated my knee causing me to have to wear an immobilizer for several weeks. During that time, I developed a DVT behind my injured knee. And that, folks, is where I got onto the craziest ride of my life. I never knew that something you may have had for 3 years but had been completely asymptomatic until now could totally blow up in a matter of days…DAYS!!! I immediately began a regimen of blood thinning medications, INR tests EVERY OTHER DAY, and daily injections. All the while tending to my own teenage daughter, the 2 year old triplets, and working a full-time job. Did I mention that my husband is working away from home Monday through Friday of each week? Yea.
Now, I realize that MANY, MANY people have it far tougher and with many more obstacles than I do. Please don’t misunderstand. I am not heading off into a pity-party, by any means. My fear of NOT writing this story very well, has me just telling it…just as it runs through my head. Ok, so back to my story….
The triplets were only our second foster placement and, like many foster parents, we dreamed of adopting through one or more of these placements. Unfortunately, with everything going on medically with me and my husband not being able to be home during the week, we had to make some VERY tough decisions and were not able to adopt these precious babies that our whole family loved (still love).
Determined to fight the disease that caused us to have to make such a heart wrenching decision, I saw and totally stumped one very seasoned rheumatologist and had a nasty allergic reaction to Humira, but then….THEN, I found the Doctor I am seeing now. While I still have MANY days in which I must force myself to move in the morning and stay upbeat through the pain, I do feel like progress is near.
The severely bad days aren’t as close together and “no cure” does NOT mean quit to me!!! Right now, I take enough medications to fill two weekly medication dispensers and I undergo Remicade infusions every few weeks (we haven’t really gotten the infusion schedule down yet).
Since this disease is still so new to me and I haven’t had much time to dig to deep in new advancements, I will try to share more of my story as it unfolds. As for now…I am trying to be proactive in my approach to FIGHTING LIKE A GIRL! (any advice would be greatly appreciated)
This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.
Most of us are on the rollercoaster ride you have described at one time or another. I am an adoptive parent of one teenage boy, but was lucky even with my Lupus, and my husband post stroke that we could adopt.
You will have ups and downs, but remember we are hear to lift you up if you fall, an ear to listen when you want to talk and a shoulder to cry on when it is needed. You have a great support group here at Fight Like a Girls Club. We all may have different medical issues, but we have all been where you are at, so please feel free to call on us to help you through the bumpy times and we will encourage to continue to Fight Like a Girl! Best wishes, Joan from Florida
Thank you so much, Joan. Lots going on here lately and I am trying very hard to get everything lined up so that the new year will mean new hope.
I have been so very blessed, with a loving family and wonderful friends. Heart and soul, I believe there are great days ahead.
NIkki, my mother-in-law just called me about your article. I grew up in your area and my family still lives there. I also was diagnosed with ankylosing spondylitis and had Iritis for over two years. I now believe that I have had this condition for over 7 years. I just thought it was no sleep from raising babies and getting older. I now have found a doctor that looks at diet to see if it is causing inflammation. I started a allergen detox diet after lots of blood work. My pain in my heels, knees and hip have almost gone. I am still in the beginning stages of learning more, but I am very happy with what has happened so far. I would love to speak to you more. We were down for Thanksgiving and will be down again for Christmas. Find me on Facebook if you would like. You are so positive and it wonderful to hear someone else’s story. Thanks for sharing your story and this website. Julie Gray
Thanks Julie. I will look for you on facebook and would love to discuss the diet with you. I would be very interested in hearing more details.
Ok well….here goes!
In the past couple of months A LOT has been going on. I resigned from my full time position because it was just the right thing to do. My doctor appointments and treatment schedule didn’t allow me to be at the office even close to fulltime so I really thought it wasn’t right to put anyone else in a bind waiting on me. Part time employment does not include health insurance coverage so I am now paying for COBRA insurance and WHEWWWWW is that outrageous. Necessary evil so to speak, since I would never be able to find coverage any other way. Now I am on an 18 month countdown to get well enough to work fulltime again so that I can get back on the insurance plan. Anyway…
In October, my rheumatologist referred me to a pain management facility. NOW…I had to think long and hard about this because I had this preconceived notion that “pain management” was a place you went when doctors didn’t know what else to do with you and just want to treat the pain and not the disease. Well, I guess that is kind of right, in the sense that pain management does only treat the pain and NOT the disease. So, with my rheumatologist in my corner fighting this disease and this new “SUPER DOC” treating my pain, here’s what has taken place.
I started November moving from oxycontin to morphine ER for pain (not a good thing) then mulled over an idea from my new Doc to consider a pain pump implant. Now, if you have ever had any reason to take Morphine (and I certainly hope you haven’t) you know the side effects. While it works pretty well for the pain, it’s pretty rough on the rest of you. By mid-November, I had decided to research the pain pump and go forward with the trial. Within hours of beginning the trial, I felt relief from the morphine going straight into my spine by way of a cathedar. Spinal headache aside….I felt very pleased with the way the whole trial went.
After deciding to move forward with the pain pump implant, my surgery was scheduled for 12/20/2011. So, I am now 10 days post-surgery and still have my staples (compromised immune system and healing due to the methotrexate and remicade treatments require staples to stay in longer). I am scheduled for removal of staples on Monday and then another remicade infusion on Tuesday.
My hair is still an issue I am dealing with….well, my LACK of hair. For some strange reason I have this weird thing where my hair tries to grow for a few days and then falls out again. The rheumatologist says this happens sometimes and probably will just keep happening until several months after my treatments have stopped.
My pain seems to be better in my back and hips, but I am still concerned that if the progression of this disease isn’t slowed soon, the rest of my joints will be in the same shape. The outlook is still hopeful and my plan to start the new year feeling better, seems to be underway. I am so blessed to have so much wonderful family and many terrific friends rooting me on. I will try to be regular with these updates as it seems this will be an ever-evolving process.
Thanks for all the support!
I was diagnosed with AS in July of 2010. I have had it for 20 years, since I was 14. I live in Diboll and you are the 2nd person in our area that I know of. I would love to be able to talk with you My son was also in the same class with the triplets at daycare. They are such precious children. It broke our hearts when we found out you didn’t have them anymore . Please send me an email and I will send you my phone number. It would be nice to have someone close who understands.
Hi Michele!!! I remember your little boy from JK! Small world. Being without the triplets is still heartbreaking and I think about them several times a day and try to stay in touch as much as I can.
I sent a FB message to you since I didn’t see your email address on here.