Tuesday, December 13, 2016

Tampa Bay Crochet: The Reason for my Absence.

Tampa Bay Crochet: The Reason for my Absence



First, I will say that I thought long and hard about whether or not to write this post. In the end, I decided that the wonderful people who are still following my blog deserved to know what has been going on during my absences. I don't write this seeking pity, only to explain that I do not intend on giving up on Tampa Bay Crochet and I am doing my very best to keep it alive.

I've had back pain ever since I was a child, but I was so active that my parents and pediatrician didn't consider it serious enough to examine further.  About three and a half years ago, my back pain worsened and I started having painful muscle spasms. I saw several doctors who prescribed pain pills and told me I most likely had tailbone pain that would fade. Months past and the pain was only getting worse. My husband worked long hours and he insisted I go to Ohio for treatment so that my parents could care for me.

I flew to Ohio and began seeing specialist after specialist. First I was diagnosed with tailbone pain, then possibly endometriosis. Once my endometriosis scan was clear, my doctors were stumped. I had several steroid injections into my tailbone and pudendal nerve.  None of the injections seemed to help. I was finding myself in the emergency room at least once a month in unbearable pain. I stopped going once I realized that all they could do was inject me with pan killers and discharge me. Then, came the worst news of all. After being released from the hospital, my husband called to tell me he didn't want to be married to me anymore. I asked if I could come home and talk about it, then he told me he had already moved and I could come pick up my clothes at the old apartment which was unlocked. 

My mom and I flew down to Florida the next day while my dad drove down to meet us. I had to use a wheelchair just to get on the flight. Once there, all i find were a few boxes of photo albums and some of my less expensive clothes. I tried calling to talk to my husband but he wouldn't return my calls. To this day I have no idea why he decided to end our ten year marriage.

As if all of this wasn't bad enough, my dad lost his job. He was luckily enough to find a replacement quickly but it meant we were moving to Georgia. I had to find a new primary care physician, rheumatologist, endocrinologist and orthopedic surgeon. After several visit and some abnormal blood tests, I finally had my answer. My rheumatologist diagnosed me with Ehlers-Danlos Syndrome type 3. Basically, my connective tissue, ligaments and tendons are too lax and do not properly hold my joints in place. I never knew I was hypermobile, I always just thought I was flexible. The worst symptom of EDS is the chronic joint pain and frequent dislocations and hyper-extensions of my joints. Some days when the pain is extreme, I have a hard time just moving around my house.

Unfortunately, there is no cure for EDS. But, I take supplements and see a team of doctors to help manage my condition. I am still in pain everyday but I have good days and bad days. 

To make a long story short, this is why I have been absent from my blog over the past few years. However, I am very determined to work on it as much as I can. I do not want to end up on disability, like so many others with EDS have, so I am desperately trying to make Tampa Bay Crochet work.

Thank you for reading my story and supporting my blog. It truly means more to me than you will every know.


4 comments:

  1. I support you! Thank goodness for your RA doc. I'm glad you have a diagnosis. Work on you for now. An update every once in awhile would be great. I gave up crochet 20 years ago, but with a great medical care I even learned to knit. Now I crochet when my hands work without pain. I'm on a large combo of meds but without my Remicaid infusions I would be in bed. Let your treatment plan start to work. I know it may seem forever but you will get there. Take care of yourself. I'm sorry about your marriage. I won't say more about that area. I hope you're able to enjoy your holiday with your parents. Relax so your body can heal. Massages helped me. Only the relaxation type helped me. Take care of YOU! Best wishes for the New Year.

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    1. Thank you so much Sharon! You have know idea how much having this support means to me. ❤

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  2. I am sorry you are going through so much. Your husband doesn't deserve you if that's all the explanation he gives you. Thank goodness you got an explanation, it does help knowing. Don't think of disability as failing. Sometimes going on it gives you time to give your body a rest. I hope you have more pain reduced days!!

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  3. I just found your blog and was perusing when I found this post. I know it's upsetting and scary right now I'm sure but you're not alone. I also have eds type 3 along with my amazingly strong 15 yo daughter and many other family members. I was the first one diagnosed and getting answers finally after so many years was great but what a daunting painful disease to have be the answer. Reach out for support and don't internalize. I was diagnosed be a genetic specialist who specializes in all types of EDS at the University of Iowa hospital and the staff their was so wonderful. Once you've found someone that can help and they give you their card use that resource. I try to crochet often to keep my fingers and hands free from dislocations. I do dislocate daily and it's horrifying and the pain is unbearable but I wait it out and usually my joint goes back in place and I move on. Daily pain is dreadful especially when high doses of narcotic meds barely take the edge off but I try to keep my chin up and think about all the greatness in my life. If you want feel free to email me. Mimibabydoll2002@yahoo.com take care.

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