Since arriving in California 3 weeks ago, we have had car trouble. The transmission line was hit by a rock while driving through a canyon and we almost blew the transmission. FYI rental cars in Palm Springs...VERY expensive! We got our car fixed (or so we thought) but it kept giving us trouble, so my husband brought it to the Ford dealership to get it serviced...again.
Long story short, and over $1,300 later, our car died on us yesterday. Luckily, I had told my husband to head home instead of continuing to the dealership where he was going to drop it off to get it fixed, because no sooner had we pulled into our driveway, our car died. My husband had to drive 3 hours to get back to the school he is attending for work, and we were suddenly without a car.
So, we called our landlady, who happens to be THE coolest landlady in the world (I swear), and she brought us to the nearest dealership where we purchased a new car which is exactly what we had been talking about getting! We were there until 8:30 last night and my husband still had to drive 3 hours to get to Camp Pendleton, but at least this trip I felt a lot more confident that he would make it there safely and wouldn't end up stranded on the side of the highway waiting for a tow truck any time soon (fingers crossed). YAY! This also means that we are back to a 2 car family, (and one is a lot more reliable) so when I have to make my 1 1/2 hour drive (one way) to my Rheumatologist next month, my husband hopefully wont have to take time off from work to bring me to my appointment. Double YAY!
Monday, March 24, 2014
Friday, March 21, 2014
Driving Over 4,000 miles = Inflammation Galore!
Three weeks ago, my family made the awesome trek across the US from North Carolina to California...well technically we made a pit stop in Maine first before heading west adding another 950 miles to our already long journey. What a beautiful trip it was! This was my first time leaving the east cost since I was an itty bitty baby, which I have absolutely no recollection of, lol.
We traveled through many mountains and across many gorgeous plains, went from -14 degrees to well over 90 degrees here in the desert. I learned that I have something called "altitude sickness" which means that the further up I go above sea level, the less oxygen my body seems to get. We just moved from NC, which is only about 295 feet above sea level...we are now living in a valley that is over 2,000 feet above sea level. That's a pretty huge difference!
Anyways, between the altitude and sitting in the car for 10+ hours every day for 6 days, my RA (rheumatoid arthritis) decided to act up. We went to the emergency room a little over a week ago (because we just got to our new base and I didn't have a doctor yet) and the ER doctor immediately assumed I had a blood clot, though I told him it was probably my RA acting up. He sent me in to have an ultrasound done on my leg just to be sure. Well, the ultra sound doctor (the technician that works for him was out on emergency leave) took one look at my leg and knew immediately what it was....my RA flaring up again! Surprise, I know my own body!! LOL
Long story short, the doctor had worked in physical therapy for about 20 years and had dealt with Lupus and RA patients and knew exactly what to look for. He showed me what was going on inside my leg, ankle and feet...it was pretty dang cool! I even got to take home a copy of the ultra sound so when I go to my new Rheumatologist in April, I can show her the images and there will be no question as to whether something is wrong or not. After at least 8 years of having RA flare ups in my feet, hands, and legs, FINALLY I have physical proof to show my other doctors!
The ultra sound showed that I have severe inflammation in the membranes around my knee cap called synovitis . It also showed a small bakers cyst at the back of that knee and in the fluid are little pieces of my knee cap that have been breaking off slowly whenever I move my leg and it's swollen. As freaky as that all sounds, I was too excited to have this awesome doctor showing me step-by-step, exactly what was going on in my body. My toes had the same things going on in them on both feet.
I think my appointment with my newest Rheumatologist is going to go really well :-D
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Living with Sjögren’s Syndrome
What IS Sjögren’s Syndrome? You might ask.
The short answer is:
"Sjögren’s is a chronic autoimmune disease in which people’s white blood cells attack their moisture-producing glands.
Although the hallmark symptoms are dry eyes and dry mouth, Sjögren’s may also cause dysfunction of other organs such as the kidneys, gastrointestinal system, blood vessels, lungs, liver, pancreas, and the central nervous system. Patients may also experience extreme fatigue and joint pain and have a higher risk of developing lymphoma. It is a systemic disease that affects the entire body" -The Sjögren’s Syndrome Foundation website
I have had symptoms of this disease for as long as I can remember. When I was a kid, I would always laugh instead of cry, (because my tear ducts don't work right) which of course use to freak my siblings out, ha ha. Crying is suppose to be good for the soul, and some days I really wish I could cry. I think my husband is thankful though, that I can't turn on the water works like some women can, hardy har har. But it hurts to cry, for me it's like little shards of glass are making their way out of my tear ducts....not fun! It's not that I can't cry at all, I can. But only a little and I have to be REALLY upset to get those little ducts working.
One really annoying thing about this disease is, the inability to sweat. I live in the desert dang it! The coldest it's been since we arrived 3 weeks ago is 60 degrees! And that's considered "cold" according to the locals we've talked to. When I get hot, I tend to turn bright red, swell up, and sometimes pass out. I don't have to do anything physical, my body just can't cool itself down naturally, so it shuts down. It stinks. But, like I said before, I've been dealing with this since I was a kid so I've kind of gotten use to it...or at least learned my limitations when it gets above 70 degrees.
~Jenny
The short answer is:
"Sjögren’s is a chronic autoimmune disease in which people’s white blood cells attack their moisture-producing glands.
Although the hallmark symptoms are dry eyes and dry mouth, Sjögren’s may also cause dysfunction of other organs such as the kidneys, gastrointestinal system, blood vessels, lungs, liver, pancreas, and the central nervous system. Patients may also experience extreme fatigue and joint pain and have a higher risk of developing lymphoma. It is a systemic disease that affects the entire body" -The Sjögren’s Syndrome Foundation website
I have had symptoms of this disease for as long as I can remember. When I was a kid, I would always laugh instead of cry, (because my tear ducts don't work right) which of course use to freak my siblings out, ha ha. Crying is suppose to be good for the soul, and some days I really wish I could cry. I think my husband is thankful though, that I can't turn on the water works like some women can, hardy har har. But it hurts to cry, for me it's like little shards of glass are making their way out of my tear ducts....not fun! It's not that I can't cry at all, I can. But only a little and I have to be REALLY upset to get those little ducts working.
One really annoying thing about this disease is, the inability to sweat. I live in the desert dang it! The coldest it's been since we arrived 3 weeks ago is 60 degrees! And that's considered "cold" according to the locals we've talked to. When I get hot, I tend to turn bright red, swell up, and sometimes pass out. I don't have to do anything physical, my body just can't cool itself down naturally, so it shuts down. It stinks. But, like I said before, I've been dealing with this since I was a kid so I've kind of gotten use to it...or at least learned my limitations when it gets above 70 degrees.
~Jenny
Introductions
Hey there! My name is Jenny, I am the mother of 2 amazing kids and married to my best friend of 16 years (though only married for 8) who is a Staff Sergeant in the Marine Corps. We are currently stationed in 29 Palms, CA....just got here actually, exactly 3 weeks ago today.
After almost 18 years of living with flareups (I'm 32 now), I was diagnosed finally in 2012 with Lupus SLE and then last year with Rheumatoid Arthritis, Raynaud's disease, and Sjögren's syndrome. Mixed connective tissue disease is an "overlap" combination of connective tissue diseases (Lupus SLE and RA).
It's not always the easiest thing in the world living with MCTD while my husband is constantly away training or deployed. But I have learned how strong I really am through this long painful journey and I wouldn't trade my life for a million dollars (I know, cheesey right?) because it has made me who I am today.
I hope this blog helps others like me, and maybe even helps me connect with other military wives dealing with the same disease or similar autoimmune diseases.
Hope you have a wonderful day.
★Jenny
After almost 18 years of living with flareups (I'm 32 now), I was diagnosed finally in 2012 with Lupus SLE and then last year with Rheumatoid Arthritis, Raynaud's disease, and Sjögren's syndrome. Mixed connective tissue disease is an "overlap" combination of connective tissue diseases (Lupus SLE and RA).
It's not always the easiest thing in the world living with MCTD while my husband is constantly away training or deployed. But I have learned how strong I really am through this long painful journey and I wouldn't trade my life for a million dollars (I know, cheesey right?) because it has made me who I am today.
I hope this blog helps others like me, and maybe even helps me connect with other military wives dealing with the same disease or similar autoimmune diseases.
Hope you have a wonderful day.
★Jenny
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