About Me

When I started this blog, it was a sort of therapy to deal with all the changes I was forced to make, like resigning from my job, and all the pain I was forced to endure – every day.  What I truly hope to accomplish with my little corner of the internet is that I will be able to help others realize that they are not alone in this world of chronic pain by sharing my thoughts, stories (sometimes funny), my struggles (rants) and successes.

I am your semi-average 40-something (not yet 45) woman who lives in Indiana.  My boyfriend, John came into my life a little over 6 years ago, which was about 6 months before chronic pain did.  Like most Americans, we were both working full-time jobs and each had 2.5 children from previous marriages/relationships.  I have 3 children, John has 2.  John’s daughter is 24, my oldest daughter is 22, then we have my youngest daughter in college at IU and John’s son who is studying at IPFW and lastly, my son, the baby of the family, is in his second year of high school.  We really just need one more boy to have the Brady Bunch!  We also have two dogs, a Shih Tzu and an English Bulldog as well as a small farm of reptiles and snakes.  While I don’t get out of the house much, someone is always coming or going and there is rarely a dull moment!

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This is me on a particularly good day when I was able to get out and enjoy a day trip with John. Those days are always nice!

So as I mentioned earlier, I started having a lot of pain, which turned into chronic pain.  During that time, a host of other symptoms slowly started to show up as well.  After several years of going to doctors and countless blood and diagnostic tests, I was diagnosed with Mixed Connective Tissue Disease, Fibromyalgia and Osteoarthritis as well as chronic migraines.  The symptoms of my MCTD are primarily those of Lupus or SLE.  I won’t go into the long history that I believe lead to my all of my chronic illnesses.  I will tell you that after a few failed marriages and relationships, I am incredibly lucky to be with John.  He is my strength, my best friend and truly supportive of me!

Like many other spoonies, I have been struggling with my health for almost a decade.  It has only been the past 4 to 5 years or so that my physical pain has truly turned my world upside down.  In October of 2012 I had to have my right hip replaced due to severe Osteoarthritis leaving me with hardly any hip.  After recovering from surgery, I tried to go back to work but had to quit my job as an Office Administrator in January of 2013.  That was hard for me!  I have always worked and I was working at a job I loved!  I am still waiting to have my other hip replaced and a much-needed back surgery to repair three herniated discs that are protruding into my spinal cord.

10 thoughts on “About Me

  1. I am so sorry you and your daughter are struggling with this. It is most definitely the most difficult thing I’ve had to come to grips with and I was in my 30’s. I had symptoms as young as your daughter so I can tell you, it is not necessarily a death sentence. Seven years is an outdated statistic, many MCTD patients live long, productive lives.
    Also, the symptoms can be managed, it is a LONG trial and error process that is extremely frustrating and makes you doubt if anything will help, but she will find something that gives her some relief from the pain.
    If she doesn’t want to go to a support group or attend therapy – honestly, I think the best thing before all of that (in my opinion anyway) is online groups. There are several on Facebook and they are secret groups, so none of her friends will know she’s a part of this group but yet she can talk to so many others that are going through the same thing she is.
    If you want to email me at havenothadmycoffee@gmail.com, I can send her a link to join some of these groups.

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  2. I just recently find out that my daughter which is now 19 but she found out when she was 18, it’s very hard for me but much harder for her cause she feel like her life is over I’m lose and I feel like a failure as a mom cause I have no answer for her of why her! But I explain to her that she’s not the only one and yet she if refuse to go to college she feels like for wat? Due to the doctor to her all the risk and the ability of the Disease she is now fail in deep Depression and feels like there no god and no one cares but me but she dnt want anyone to know when she have her break outs she in her room she don’t want to be bother and she crys I’m there for her I encourage her but I’m so Afraid that’s she truely going to give up! She speaks up it all the time she had mix condition tissue disease, I’ve ask her to go to a Therapist or support group and she refuse to do either ! I dnt know who to go to for help!! Wat do I do??? It’s so hurtful she counts from when she started having the Symptoms and she say ok now I only have 7 or less more years to live I b glad when glad takes me I’m tried of hurting she expresses how she cry her self to sleep and cry al day! She had a job but she would come home due to she’s in pain and she’s so irritable ! I m reaching out for help Advice !

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  3. Hi my name is Iris. I feel your pain. I have mixed connective tissue disease. I have been one of the lucky few who this illness I will not allow to live in free reign over me has been a challenge for over forty years. Lupus, spinal stenosis,herniated disk, muscle weakness, disk disease and others have played along with depression I should be in sane, my outlook on life is this. Everyday I do what I can when I can and how I can.i found my piece of mind along time ago by not trying to change something or make excuses for the way I feel, or something I don,t feel like doing. I go to the gardens I have created over the years, step by step,one pile of dirt at a time. Everyday I pile my problems into the dirt and thank the Lord I was able to play in the dirt one more time. I must say all my problems have become five beautiful breathtaking gardens. I look at life this way.under all the dirt in life there is still something you can do to show the people who may not understand our illness,beauty.

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  4. I’ve only read a few of your post. Entries, don’t know how I could have missed your blog.
    I’ve dealt with multiple auto immune diseases for many years. The first diagnosis was SS in 1995, then came the rest. I have peripheral neuropathy, herniated disk in back and neck. Way too many procedures that has left me in worse form and peripheral artery disease. Oops, I for osteoarthritis. Of course I could be leaving out a few but my memory sometimes don’t remember! Lol
    So I run out of spoons a lot of days. I’m not done living , although I too go days without leaving home.
    So so happy to have found your blog!
    😊👍

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  5. By the time I get ready, I have to go back to bed! ha. I have osteoarthritis and I am 43. This past weekend I believe the weather must have changed because I was in more severe pain than usual. I forgot how serious my illness is. I take Tramadol and Cymbalta and have it managed to the best of my ability. Well, there was no managing this weekend. The medication did not touch the pain. I could not get out of bed. It was a challenge just to get a shower. Three days of this sent me into a deep, dark depression that I had not experienced in awhile. It is humiliating to not be able to get up to feed yourself. Do i stay hungry or attempt to fix something (a bowl of cereal?). I don’t know if the pain or the depression came first, I just know I was scared. i live alone (with my 2 cockatiels! they help me so much) and I don’t have help.

    My boys are grown at the ages of 22 and 21. They are very busy with their lives, and frankly, are not aware of the severity of osteoarthritis. Nor do most people-I have a handicapped parking placard and parking space at my apt complex. 4 different people parked in it within 5 days. What the hell? Is it because they saw me walk and think I don’t need it? I felt worthless after this happened. My apt complex manager said they “tag and 10”, meaning they tag the car and they have 10 days to move the car. They said that’s the law! I am very grateful for my life, but it is very hard. Things like this and the general lack of compassion and understanding make it more complicated and affect my mental health.

    It’s hard to schedule events with friends-I truly never know if I will be able to make it. But I don’t want people to stop inviting me, either. Just a few thoughts from my life over the past week or so.
    Thank you for sharing. I felt very alone when I was first diagnosed with osteoarthritis. I have severe depression that is managed well.

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  6. Jenn,
    Thank you so much for your reply! I am happy you felt my honesty is helpful. Your story touched my heart! I am also glad to hear you have such a great supportive family! It is heartbreaking for me knowing there are so many out there that have loved ones that doubt them, doubt their pain.
    The goal for me is to help others understand that they are not alone, to let them know someone understands. Also to help those not afflicted with chronic pain understand a little better what it is like to be us.

    Best Wishes,
    Tina

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  7. I am in tears,, I feel your pain. I do not have Fibro but I do have RSD(Reflex Sympathetic Dystrophy) as well as migraines, rods/screws holding my spine in place(except for the disintegration above & below the hardware). and a spinal cord stimulator leaving me to feel like ” Inspector Gadget”!. I only tell you this so that you know you are not alone. Reading your moment by moment struggles was like looking at my life. I have 12 year old identical twin sons,they were miracles blessed upon me so that I have love, help and suppor and moments of laughter…I believe God blessed me with two so that they would never be alone,,, My husband Ruben like your boyfriend is my rock. I am blessed with a supportive family and circle of friends. I have “lost” family members, friends , co-workers who didn’t believe what they couldn’t see.. Ironically, I was an Occupational Therapist and worked to help others live a happy and productive life despite the limitations of a injury, disease, brain injury etc… If only they took the time to look- pain is not easy to hide! I typically hear “but, you look good”!! God, how I hate that phrase. Like you, it takes all day to get “ready” for any activity, If I attend a family function, I get dressed, do my hair and make-up to make others more comfortable. If I went to a party, sporting event. school activity looking like I feel, it would just make those around me uncomfortable. I bet like me, after such outings you spend days in bed because the pain flare is so bad….
    Thank you for being so brave and starting this blog, You will touch so many lives by your honesty- others will now know that they are not alone. I pray you have restful nights and pain free days(or at least a 5 on a scale from 1 to 10 -lol)
    Sincerely,
    Jenn Perez

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