When I got married March, 5, 2011, I thought it would be forever, but love was blind and I didn’t see how truly bad his alcoholism was, I didn’t realize I would come last and his mother, drunken brother out of state, and anyone else would come before me! I thought you joined as one? What did I know. I married late in life at 48 so I thought all the drinking, partying with friends would’ve been out of his system. I have a chronic illness-mixed connective tissue disease/lupus and I am immunosuppressed. I didn’t know how filthy, and I don’t mean a normal man, I mean FILTHY he was! I won’t go into detail on the bathroom, but I will say you can’t sterilely clean a bathroom (bathrooms are one of the most largest places with a high percentage of germs on this Earth) with a 1 sheet of wet wrung out paper towel! I take chemotherapy for my illness which is why I am immunosuppressed and germs are NOT my friend! I like to keep my home tidy. I pick up after myself and put things away and keep my main living area where company sees tidy and neat! My home office is where I balance out life and it’s more cluttered! I won’t go into all of our issues because I have let it go and it doesn’t matter anymore, but my divorce was final April 4, 2016, and since I had detached and let go a long time ago, this day was the most happiest day of my life! I will stay single and never get myself into that predicament ever again! I do best alone and having fun with my friends and a few family that can handle my chronic illness! Life is great!
MCTD
A bit of education of my chronic autoimmune illness.
http://www.arthritis.org/about-arthritis/types/mixed-connective-tissue-disease/
Mixed Connective Tissue Disease (MCTD) – NORD (National Organization for Rare Disorders)
Fall Approaching Quickly
It has been a very wet summer here in the Mitten State and the past few weeks we have had our fair share of rain and gloomy overcast days! It keeps my joints and muscles in a fit of rage. I am still managing to work my 8-hour shift with lots of stand up and stretch breaks. My hands and fingers have been bothering me a lot the past month. This is something new and I’m not sure if it is part of the MCTD or OA. I’m going to put on some Aspercreme tonight like lotion to see if it will help. It sure does my knees when I use it.
I can’t believe it is the end of August! Before I know it, the mower and summer things will be put away and all my winter clothes, snow blower, and shovels will be out! Summer has gone by way too fast this year! I just stay focused on work as it seems to be the only real normalcy I can depend on in my life, other than my furbabies 🙂 Right now the tomatoes are coming and it is time to can them for stewed tomatoes, salsa, and I am going to try making my Italian friend’s homemade spaghetti sauce to freeze! At least I’ll have yummy stuff ready for warm comfort food when it’s -20°F outside. It’s a lot of work but well worth it in the end!
I guess it’s time to close as I have two cats staring at me waiting for their wet supper and it’s after 10 p.m. They’re patient souls unlike their meowmy 🙂 Have an as pain-free sleep as possible!
Meet My Furbabies :)
My first two rescues have their own community page on Facebook. If you would like to LIKE their page, here is the link: https://www.facebook.com/pages/Tommy-Talladega-Indy-Da-Meezer/270865126289042?ref=hl
TT as he is known to his FB friends was my first rescue. I was living in Arizona at the time and went to Arizona Animal Welfare League in Phoenix, Arizona ( https://aawl.org/ ). He came home with me on January 14, 2007, at 10 months old. He was a feral found on the hot streets of Phx and was captured by a high-kill shelter. On the day he was to be euthanized, March 24, 2006, AAWL came in and rescued him up and saved his life (lucky for me). He had a health history from being on the streets and in the high-kill shelter. He had kitty colds and Giardia and it took a lot of vetting to get him healthy for adoption. He was on the adoption block less than an hour before I found him. He is 9 years old now. When I entered his room of the cattery, he came running from the other side of the room and gave me what came to be known as his greeting “needle stick.” He will greet you doing this where he will put his paw on you any place he can reach, stick you with his index claw just enough to let you know he is there, and stretch! He is friendly and loves everyone and everything. He greets everyone who comes through the front door, has tried to befriend a baby skunk on his harness/leash walks. TT is the best $100 I ever spent and he came fully vetted, up to date with shots, neutered, and microchipped!
Indy Da Meezer! Indy was born April 24, 1997, on the back porch of my coworker in Mesa, Arizona, who has since retired. He was a runt and his twin journeyed to Rainbow Bridge early on. Indy is a fighter and very sassy. It didn’t matter to him his fursibs were bigger than he and he fought to survive and won the battle! He came to me at 2 months old in June 1997. He keeps his current furbsibs and humans in order. He is so sassy but yet just as loveable with head butts. He has silly quirks like do not pet him until he smells your hand and it doesn’t matter that you stopped a second. If you restart to pet, he has to smell you or you will get the “Meezer thump” and he hits very hard lol. During his kitten years, you couldn’t pet him. My Pappy (dad) and I spent the first few years working with him. He liked it but yet he would shred you 🙂 I wouldn’t trade his sass for anything! He is my first Meezer and I am forever changed by the breed … LOVE them! He was my responsibility as his owner so I took him for his shots, he is neutered, and microchipped!
Buddy Boo’T: Boo was found in Maple Rapids, Michigan, October 31, 2012, by my niece while trick or treating! He was about 2 weeks old. This is a very small village so she and the family looked all around for other litter mates and mommy and couldn’t find anything, so she brought this little guy home and he was bottle fed until he was weaned. My husband has always wanted a lap cat and thought Boo fit the bill and brought him home … WRONG! He is a sassy soon to be 3-year-old who doesn’t like to be picked up or held and he will yell at you to let you know! Knowing this, I don’t pick him up as a rule and I can walk passed him, step over him, whatever, but because my husband has picked him up every time he walks near him he yells at him lol. I chuckle! Boo also has his shots and is neutered. We need to get him microchipped yet which will be done soon! He still tries to assert his dominance with the older boys, but Indy lets him know pronto he is the King of this house. TT is docile but occasionally you will find him showing Boo that “no, you are the peon!” MOL (meowing out loud).
These are my kids with paws and fur! They are my world and keep me fighting on the bad days with MCTC/mixed connective tissue disease and they know! They curl up with me in the love seat and purr to help me feel better. There is no medicine stronger than their love ❤
I hope all you kitty fans have enjoyed meeting “My 3 Sons.”
My Life
When I was first diagnosed with Hashi’s, never did I expect I’d end up with a host of autoimmune disorders that would forever change my life! I should have though with my family history; my personal history of pain; inflammation; swelling; hot, red, and swollen joints. My mom and maternal grandmother had rheumatoid arthritis and my aunt had lupus. Nowadays, they are using Mixed Connective Tissue Disease (MCTD) as our diagnosis when there are more than one diagnosis, i.e., I have lupus, Raynaud’s, Hashi’s, Sjogren’s, my platelets and white count is all over the charts as is my kidney function. I had moved to Arizona in November 2005 to take a job as a medical transcriptionist (my career) and after training I was able to telecommute from home. Internet is awesome! It is a great way to hold down a full-time job when many days I feel rotten, but I can get up to my freshly brewed coffee and go into my office, boot up, and punch in online and complete an 8-hour shift. I make sure to get up to stretch and move and I have two 10-minute breaks and a 30-minute lunch break. My job is no different than leaving home and going to work other than I don’t have to drive, buy work clothes, or spend for gas and lunches. Anyway, I was in AZ nearly 10 years and then the rules were changed and I was allowed to move back home to my home state of Michigan. I have an awesome rheumatologist here who diagnosed me; my 85-year-old dad is here; a few family members that I let into my life because the rest are too full of drama and cause me stress so I cut them out of my life! My health is priority to me. I have a small support group to include my dad and my close friends. I’m not lucky to have a large group like many people. My good day would bring most people to their knees. An invisible disease makes people think there is nothing wrong and I have to take jabs from people including those closest to me and those closest me cause me the most stress because they see me on a daily basis struggle to perform a simple task. Even though I am a transcriptionist, my fingers and hands are far from being flexible and nimble. I can’t grip. Anyway, if you don’t have an autoimmune disease (invisible disease) and you know someone who does, please Google what it is the person has. It is real! Our bodies attack our own organs, cause us great pain, and lead to more diagnoses. We balance our lives the best we can with the help of our medical teams, meds, supplements, exercise that we are able to do and when we are able to do it, and we fight daily to do what our healthy counterparts do with ease. We remember the days before things progressed when we could do things with ease too and it’s extremely frustrating. Thanks for letting me rant this evening. I need to be sure to get back here often to blog! If I can help someone learn something from a post, then my daily struggle isn’t in vain!
What is Mixed Connective Tissue Disease (MCTD)
Per Mayo Clinic: “Mixed connective tissue disease (MCTD) has signs and symptoms of a combination of disorders — primarily lupus, scleroderma, and polymyositis. For this reason, mixed connective tissue disease is sometimes referred to as an overlap disease.
In mixed connective tissue disease, the symptoms of the separate diseases usually don’t appear all at once. Instead, they tend to occur in sequence over a number of years, which can make diagnosis more complicated.
Early signs and symptoms often involve the hands. Fingers might swell like sausages, and the fingertips become white and numb. In later stages, some organs — such as the lungs, heart and kidneys — may be affected.
There’s no cure for mixed connective tissue disease. The signs and symptoms are usually treated with certain medications, such as prednisone.”
“Symptoms: Early indications of mixed connective tissue disease can include:
- General feeling of being unwell: This malaise may be accompanied by increased fatigue and a mild fever.
- Cold and numb fingers or toes (Raynaud’s phenomenon): In response to cold or stress, your fingers or toes might turn white and then purplish blue. After warming, the fingers or toes turn red.
- Swollen fingers or hands :Some people experience swelling to the point where the fingers resemble sausages.
- Muscle and joint pain: Joints may become deformed, similar to what occurs with rheumatoid arthritis.
- Rash: Red or reddish brown patches may appear over the knuckles.”
The Early Years
From a very young age, I complained of fatigue and pain. I had more colds, upper respiratory infections, tonsillitis, Strep, etc. than I have fingers and toes to count. It wasn’t easy for me to run in PE like all the other kids because it made me hurt. I loved sports, but the pounding on the hips, knees, and ankles made them scream in pain. In my younger years, it was put off as “growing pains” and nothing was ever looked into. I had knee injuries from basketball that led to three arthroscopic procedures before I graduated high school, but I kept forging on anyway.
I took 9 years off between high school to sew my wild oats so to speak, party, and get it out of my system, then I went to college.
After graduating college, I landed my first job in a children’s lock down inpatient psychiatric hospital. I started out in transcription and learned so much, then I went to the unit and was a Unit Coordinator and continued with transcription. As Unit Coordinator, I also assisted on the floors with take downs, restraints, and getting my ass kicked in the process. A psych patient that goes off has more strength than I’ve ever seen in my life! Anyway, I left there for a better paying job in the Capital City, Lansing, Michigan, working for Ingham Medical Center, now known as McLaren Greater Lansing, after a few different mergers and parting ways with Ingham County.
Fatigue and joint pain continued to plague me continuously and was always there with me in my career endeavors, as well as my personal life. Some blood work was done and I was found to be hypothyroid and to have extremely low platelets (30,000), but of course the physician never delved any further and told me be careful to not cut myself. I looked up on my own and low platelets are the result of thrombocytopenia (low platelets) and platelets cause your blood to clot.
Fast forward another few, maybe 10 years! I’m now working for Sparrow Healthcare System. The fatigue is past the point of no return and I have changed docs as fast as I change my underwear (and that’s pretty fast). I tried one last time and to my surprise I FINALLY found a PCP that helped me, Paula Therrian, MD, my savior. She walked into the room and we exchanged meeting pleasantries and I was honest and said “I don’t trust docs because I have been to so many trying to find someone who will look into why I’m fatigued, why my platelets are low, and why I have continuous joint pain and pain all over!” She listened to everything and said “I don’t typically do rheumatology blood work because it’s not my area of expertise, but I’m going to run a few” and she did! She personally called me a few days later to come into the office to talk about them which I did.
My first autoimmune disorder diagnosis had come in … Hashimoto’s thyroiditis, also known as chronic lymphocytic thyroiditis, with a result of well over 4000 and shouldn’t be higher than 40. I said “40?, WTF?,” and she said “I’m immediately referring you to a rheumatologist because where there is one autoimmune disease, there are certainly more to follow.” Rheumatology waiting lists are long and in about 5 months, I went to see Justus Fiechtner, MD, and that is where I was formally diagnosed with mixed connective tissue disease and lupus. He also diagnosed me with fibromyalgia and chronic fatigue syndrome all on the first visit, with an extreme watch on my kidneys and platelets. I’m thinking “I’m doomed!” Dr. Fiechtner felt the reason lupus became so pronounced and severe so quickly was the stress of taking care of Ma and her quick diagnosis and death from ovarian cancer within a time frame of less than 3 months. He said it “was extremely traumatic psychologically, as well as physically,” and it was a PTSD-type situation in comparison. I thought “wow!”
Anyway, I started all the medication with more side effects than I care to think about, but gradually the lupus symptoms seemed to ease up some and I began to feel like living again! I was diagnosed on the one-year anniversary of Ma’s death, 10/26/2003. I was leading a very productive life with work, socializing with my friends, visiting my family and yes, I had flares but nothing that brought me to my knees like I had been living with.
Then I started researching moving to Arizona. I needed a change of pace after Ma’s death. I found a job posting for Mayo Clinic Arizona on their web site for a home-based medical transcriptionist position. Our department at Sparrow was on very shaky ground and my gut was telling me “get out!” I completed the online application, uploaded my resume, and 2 days later I received a call to schedule a test and if I passed would be granted an on-the-spot interview! I gladly took it and flew to Phoenix/Scottsdale in October 2005, aced the test, aced the interview, and was hired on the spot upon completion of my interview. I was to start December 5, 2006. I flew back to Michigan, put in my notice at Sparrow, and began packing as Mayo was paying a relocation/moving company to move all my things to from Michigan to Arizona!
The relocation proved to be very stressful and bam I’m into a flare and then my meds ran out! No biggy, right? I made an appointment with a Mayo rheumatologist. Since I had been on my meds, some of my blood work was on the borderline and he didn’t renew my meds which really put me in a tailspin. Note: I said some were borderline, but the rest of the labs weren’t good. I couldn’t afford to fly back to Michigan, so here I am with no meds getting worse by the day. The Arizona summers prove to be grueling because as any lupie knows sun is a huge factor in bringing on a flare, as well as stress. My life was a bundle of stress with Pappy in my household and the bills insurmountable, but somehow I force myself on and dealt with it the best way I know how!
Fortunately, Mayo changed our department rules of living in the Valley of the Sun so I asked to move back to Michigan! I was told I could do that so I saved every single penny, went through bankruptcy and foreclosure in Arizona, and took myself home! I have a wonderful support network of very close friends, some lifelong, and of course I am back with my rheumatologist who diagnosed me 12 years ago! I have progressed through the years and I have flares, but there is no place I’d rather be and I am almost 10 years with MCA 🙂 MCTD and lupus has changed my life forever and it has changed me mentally and physically. The simple tasks I took for granted I no longer do! It takes me longer to do simple things and some days I am not able to do them at all! I only wish my husband was more supportive, understanding, and knowledgeable, but I have come to realize if he cared he would research my illnesses and help rather than create me more work, hardship, stress . He is what he is … ’nuff said! I will add to this as my brain flog remembers! Until then, thank you for stopping by and reading 🙂
Inspire Me?
What was the one experience that completely changed your life? What happened? How did it change your life?
I had no idea what to blog about so I clicked on “Inspire Me” and this is what it said. “What was the one experience that completely changed your life? What happened? How did it change your life? This being a blog about MCTD and my many autoimmune disorders, I said “let’s do it!” When I received the MCTD/lupus diagnosis 10/26/2003 that completely changed my life forever! That day was also the one-year of my Ma’s death to a short but vicious battle with ovarian cancer! Anyway, I should’ve been diagnosed when I was a little girl! I complained in single digit ages, then preteen, teen, 20s, 30s, and at 40 BAM! Sharing my medical history and family medical history with my rheumatologist was very therapeutic because what I endured all those years ago made complete sense now! Back then it was growing pains, you’re too fat, you’re depressed, you need to find a hobby, and the list goes on! In the 11 years since being diagnosed, lupus has taken a great hold on my life and the simple tasks I used to easily do are now more cumbersome, frustrating, and some days I am unable to do them at all! With that being said, depression and frustration set in as I’m a very independent and spirited gal who has always been self-sufficient in anything I did, so for me to ask for help was exasperating to say the least! I have somehow stumbled through life hanging on to my career because it’s the only thing I can depend on for any normalcy to my life! I am a medical transcriptionist and am very fortunate to telecommute so I sleep as long as I can, get up pour my coffee, and head into my office and clock in and type for 8 hours. I’m very grateful. The long hours of sitting with minimal breaks is taking its toll and i keep fighting to work and keep that normalcy that I can depend on Monday through Friday. Those closest to me don’t understand and some don’t even try which blows my mind, but if I can’t expect it from someone I have been loyal to, then guaranteed me being the spirited and direct gal I am, I will say “You’re done!” Anyway, I need to be better about blogging and half the time I forget my PW and can’t get in, but writing this is very therapeutic so I truly do need to make it a priority 🙂
World Lupus Day May 10, 2014
Thank You, Julian
Celebrate World Lupus Day
Saturday May 10, 2014
Please listen to this lupus awareness YouTube video from the Lupus Foundation of America. Julian Lennon tells about his friend Lucy Vodden who had lupus, and was the inspiration for the Beatle’s song Lucy in the Sky with Diamonds.
To find out more about World Lupus Day at the Lupus Foundation of America, go to the official World Lupus Day web site to learn more and to get some ideas you can use to raise awareness in your little corners of the world and cyberspace.
Lupus Foundation of America – World Lupus Day Page
Happy World Lupus Day!
Days In The Life of An MCTD Warrior 
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