Hi Friends,
Sorry...I didn't realize I stopped blogging this week. I've been recovering from the chemo and IV steroids. They seem to be helping, but they also come with side effects of lethargy, pain, and vomiting. So, I've been recovering VERY slowly as recommended by my doctors. And I'm still in bed a lot of the time. When not in bed, I seem to spend the rest of my time working with the doctors on my team. I currently have 9 doctors on my "dream team." Since lupus is a systemic illness (that is, it affects many of your body's systems), I need a specialist for every system currently being affected. So, basically -- my excuse for not blogging was I spent the whole week doing these three things. 1. Seeing doctors. 2. Having testing done that was ordered by those doctors. and 3. Resting/recovering from the lupus flare I am currently in.
On Wednesday, I voluntarily surrendered my driver's license to the DMV. I felt it was the morally responsible thing to do after having a seizure while driving. The neurologist will be working with me to determine the cause/treatment course given what happened. Meanwhile, I am under orders to take all medication as directed and control my pain well. I take 18 meds at the current time and several of them if missed could bring on a seizure. Also, when my pain is really bad, my heartrate and blood pressure skyrocket and that as well could cause a seizure. So, I know what I need to do on my end, and I have Bill's full support.
Today was Thanksgiving. I hope you all had a wonderful day...a day filled with the love of friends and family and of course, lots of good food. I'm not up to much activity yet -- but Thanksgiving was the perfect holiday for me. That is because it only involves 3 things -- being thankful (which I am), and eating and napping (both of which I'm a pro at!). Bill has a lot on his plate figuratively, and we decided not to add cooking to it today. So we elected to go out for dinner at the HomeTown Buffet here in Oxnard. We've done that in the past, and it's always been a good experience.
So, we slept in today. This morning we all kind of dawdled around the house and eventually did our daily chores. At about 3 p.m. we went out for dinner. It was exciting because it was the first time all 6 of us drove as a family in our replacement truck. We used the money paid for our totalled Ford Expedition, and we replaced it with a 2000 GMC Sierra 2500 Pick Up truck. It has the double cab, so it seats 6. It is also a 4x4 with a towing package, so that will come in handy out on the land. It's beige in color, which wouldn't have been my first choice -- but at this point, I'm just glad it's not white because it seemed that most of the vehicles for sale around here were white.
Anyway, our Thanksgiving dinner was very nice. We ate and we ate and we ate. Great food, great desserts. They even have slurpees there now, which was an unexpected treat for this 7-11 baby! I took lots of pictures of our Thanksgiving Day and meal and posted them on FB if you are interested.
For me, dinner was really good. And I ate, and I ate -- until all of a sudden I felt the chemo tummy and then it was not good anymore. I ended up going outside with Nate to get some fresh air until everyone else finished up. When we got home, I vowed to never eat again, and then I lay down and took a 2 1/2 hour nap. Since then, I've just been hanging out in my room, playing around on my laptop. Yesterday, Bill let me order a beautiful pink alligator carrying case for it as well as a butterfly skin to decorate it. So, I can't wait for it to come this week.
Isaac and Bill had a lot of energy today. They rotated the tires on the new truck and did some routine maintenance on it. They also brought in the Christmas decorations and started getting the house ready for Christmas. Isaac brought me a Santa hat to wear -- but I just wore it in my bed as I didn't really have the energy to help.
When we left the HomeTown Buffet today, we drove past Best Buy. It was about 4:30 p.m. and people were already camping out in their tents in a line waiting for Black Friday tomorrow morning. Bill and I laughed and decided there is nothing we want bad enough that we'd be willing to sit all night out in the cold for. I am planning to go to Walgreen's with him tomorrow -- but that will be it. He has some RXs to pick up there, and I'm in need of a new perfume. I figure there may be some good sales there tomorrow.
Also, I am very excited because one of my BFF's, Shirlene, is coming to visit tomorrow. I haven't seen her for several weeks. She's the one who had Nate and Isaac stay with her and her family for almost 2 weeks during my last hospital stay + car crash afterwards. Anyway, I am thrilled to get to see her as well as her son, Brandon, and his girlfriend, Margaret. I miss them all so much.
On that note, it's late and I should go to bed. They are driving here from PalmDale, so I'm not sure when they'll be arriving.
With thanksgiving for our friendship and
Much Love,
Shel
_______________________________________________________________________
PostScripts for Thanksgiving:
"For flowers that bloom about our feet;
For tender grass, so fresh, so sweet;
For song of bird, and hum of bee;
For all things fair we hear or see,
Father in Heaven, we thank Thee!"
--Ralph Waldo Emerson
-------------------------------------
"Hem your blessings with thankfulness so they don't unravel." -Author Unknown
--------------------------------------
What the Bland Family is thankful for:
(A family tradition at the Thanksgiving dinner...)
Isaac: "eating this food and having dinner at the HomeTown Buffet."
Nate: "getting an XBox for my birthday."
Molly: "my family"
Cameron: "My life is hectic, but I am thankful because I know that many people have it worse."
Shel: "thankful that I am still here...that I lived through my fiery car crash. I recognize that God provided me with angels to get me out. There is no earthly reason I should be alive as my car burned to the ground within minutes. It was a miraculous exxperience and I believe evidence that I have a purpose-filled life that I am not done with yet."
Bill: "also thankful for Michele's life and that we were able to find a good replacement vehicle with the insurance money."
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Friday, November 26, 2010
Sunday, November 21, 2010
MISSION ACCOMPLISHED....
Hi Friends,
I am having some relief with my lupus headache, since I finished the 3rd round of IV Solumedrol. I'm happy -- but it's about time! I am able to go longer between pain med doses and I actually slept all of last night. I was determined to go to church today, so with the help of a big dose of Zofran (for the chemo puking) and Dilaudid (for the headache) -- I made it. I was pretty proud of us, because we haven't picked up the new (to us, at least) truck yet. Since our car only seats 5 and we are a family of 6 -- that meant 2 trips to and from church. Luckily, the church isn't too far away. And I was glad to go. Since then, I came home and have been resting comfortably in bed.
Tomorrow I am going to see the neurologist with Bill at 10:30. Hopefully, he'll have some answers to what's going on in my loopy brain. And then at 3:00 Annie is taking me to the urologist, which is always fun, right?
More later...it only gets better from here;-)
Much Love,
Shel
I am having some relief with my lupus headache, since I finished the 3rd round of IV Solumedrol. I'm happy -- but it's about time! I am able to go longer between pain med doses and I actually slept all of last night. I was determined to go to church today, so with the help of a big dose of Zofran (for the chemo puking) and Dilaudid (for the headache) -- I made it. I was pretty proud of us, because we haven't picked up the new (to us, at least) truck yet. Since our car only seats 5 and we are a family of 6 -- that meant 2 trips to and from church. Luckily, the church isn't too far away. And I was glad to go. Since then, I came home and have been resting comfortably in bed.
Tomorrow I am going to see the neurologist with Bill at 10:30. Hopefully, he'll have some answers to what's going on in my loopy brain. And then at 3:00 Annie is taking me to the urologist, which is always fun, right?
More later...it only gets better from here;-)
Much Love,
Shel
Saturday, November 20, 2010
It's raining, it's pouring...
Dear Friends,
Out with the old, and in with the new. It seemed appropriate that I woke up to pouring rain today. It made me think of all the more seasonal states I lived in like Wisconsin and rainy Washington, and even Florida where we got monsoon rains with thunder and lightning and hurricanes. I love sunny California, but sometimes I miss the seasons and a good, hard rain. So, today was my morning -- and I visualized the chemo/steroids washing away my old illness, so that new healthy cells could grow. And I'm not usually into happy visualization -- I'm generally more whiney as they inject toxic chemicals into my port to kill the bad stuff while unfortunately, also killing the good stuff inside me:-) But it saves my life...so while it's not a pleasant choice, it's definitely necessary.
I had a rough night last night and gave up after sleeping less than 5 hours... I kept waking up to vomit (gotta love chemo) and/or take Dilaudid (for pain) or Zofran (to stop puking). At 5 a.m. I decided it was more miserable to try to sleep, so I lay in bed watching while Isaac, Bill and all the animals sleeped. I played on my laptop and nobody seemed bothered. I would've moved to the sofa if it seemed to bother them, but it was more comfortable in bed and closer to the bathroom where I was spending too much time anyway.
At 7 a.m. I got up and started obsessively cleaning the house (Saturday is our chore day after all), before anyone else was awake and could stop me. I cleaned the bathrooms kind of and put away the dishes. And I swept the kitchen and laundry room floor. I'll consider it my exercise for the day, and it kind of made me feel productive.
At 9 a.m. my home nurse showed up to do my third (and hopefully last, at least for now) Solumedrol infusion. My heart rate is starting to calm down and the pain was a bit better this morning. But once again, I've been pretty much grounded to my bed for the day, and Bill and the kids nicely finished cleaning the house for me. Unfortunately, the steroids make you worse before you feel better, so by the afternoon my headache was really bad and I look really bad -- puffy, discolored, bruised, etc. Tonight will be hard, but hopefully in the next day or two I will get some headache relief and can switch back to only the oral Prednisone. And maybe even Percocet versus Dilaudid...
Bill and the kids are hanging out and having a nice Saturday at home. Bill just went out to get ingredients for dinner, some of my prescriptions, and a different ankle brace for Molly. She is still struggling with a sprained ankle which has been taking FOREVER to heal. Her school PE class and HUGE campus for High School don't really help. Since she's off of school for the next week -- she'll have lots of time to rest it, take anti-inflammatories, and ice it. And Bill will take her back to the doctor to have it rechecked.
Other than that -- not much new here. I did manage about an hour nap in the late afternoon. I am still very sick, but hopefully on the road to recovery. I'm glad to be home. And between SuperMan, the kids, and the animals -- and my large teams of doctors, nurses, and friends -- I am well-loved and taken care of.
Tomorrow my goal is to go to church. I'm not sure it's a realistic goal. But I'll pray about it and Bill says maybe? It would feel grand...
More tomorrow and Much Love,
Michele
Out with the old, and in with the new. It seemed appropriate that I woke up to pouring rain today. It made me think of all the more seasonal states I lived in like Wisconsin and rainy Washington, and even Florida where we got monsoon rains with thunder and lightning and hurricanes. I love sunny California, but sometimes I miss the seasons and a good, hard rain. So, today was my morning -- and I visualized the chemo/steroids washing away my old illness, so that new healthy cells could grow. And I'm not usually into happy visualization -- I'm generally more whiney as they inject toxic chemicals into my port to kill the bad stuff while unfortunately, also killing the good stuff inside me:-) But it saves my life...so while it's not a pleasant choice, it's definitely necessary.
I had a rough night last night and gave up after sleeping less than 5 hours... I kept waking up to vomit (gotta love chemo) and/or take Dilaudid (for pain) or Zofran (to stop puking). At 5 a.m. I decided it was more miserable to try to sleep, so I lay in bed watching while Isaac, Bill and all the animals sleeped. I played on my laptop and nobody seemed bothered. I would've moved to the sofa if it seemed to bother them, but it was more comfortable in bed and closer to the bathroom where I was spending too much time anyway.
At 7 a.m. I got up and started obsessively cleaning the house (Saturday is our chore day after all), before anyone else was awake and could stop me. I cleaned the bathrooms kind of and put away the dishes. And I swept the kitchen and laundry room floor. I'll consider it my exercise for the day, and it kind of made me feel productive.
At 9 a.m. my home nurse showed up to do my third (and hopefully last, at least for now) Solumedrol infusion. My heart rate is starting to calm down and the pain was a bit better this morning. But once again, I've been pretty much grounded to my bed for the day, and Bill and the kids nicely finished cleaning the house for me. Unfortunately, the steroids make you worse before you feel better, so by the afternoon my headache was really bad and I look really bad -- puffy, discolored, bruised, etc. Tonight will be hard, but hopefully in the next day or two I will get some headache relief and can switch back to only the oral Prednisone. And maybe even Percocet versus Dilaudid...
Bill and the kids are hanging out and having a nice Saturday at home. Bill just went out to get ingredients for dinner, some of my prescriptions, and a different ankle brace for Molly. She is still struggling with a sprained ankle which has been taking FOREVER to heal. Her school PE class and HUGE campus for High School don't really help. Since she's off of school for the next week -- she'll have lots of time to rest it, take anti-inflammatories, and ice it. And Bill will take her back to the doctor to have it rechecked.
Other than that -- not much new here. I did manage about an hour nap in the late afternoon. I am still very sick, but hopefully on the road to recovery. I'm glad to be home. And between SuperMan, the kids, and the animals -- and my large teams of doctors, nurses, and friends -- I am well-loved and taken care of.
Tomorrow my goal is to go to church. I'm not sure it's a realistic goal. But I'll pray about it and Bill says maybe? It would feel grand...
More tomorrow and Much Love,
Michele
Friday, November 19, 2010
Cameron just escorted me back to bed and grounded me...
Hi Friends!
Apparently I've trained that boy too well. Cameron volunteered to stay home and babysit me today as Bill had a meeting at work this afternoon and some prep work to do before it. Cam and Molly have all of next week off of school for Thanksgiving Break, and apparently he was doing "nothing" in all of his classes today -- so Cam got the job by simply volunteering. Being on all my regular meds + high dose IV steroids + Dilaudid and Fentanyl, I am considered a risk to myself -- I can't imagine why??? I'm not going to take it personally that Cam's wearing a shirt that says: "You don't have to be crazy to work here...They'll train you."
Anyway, I slept fairly well last night with the help of pain meds and zofran for the vomiting. I can definitely feel the chemo -- I am not throwing up, but the idea of food is completely repulsive. So I am just focused on staying hydrated. My nurse, Mary, came at 9 a.m. this morning and adminstered my 2nd dose of IV solumedrol. After 2 days and 2 grams, I am flying high in a drug-induced stupor and not looking forward to the crash. After she left, I got up and was cleaning my already-clean-enough house and doing laundry. I managed to get in a bath and even paint my nails, before I was escorted back to bed by Cameron and grounded for the rest of today...he has Bill, the doctor, and nurse to back him up...so I will listen. Plus, he told me he's afraid I'll do too much and pass out. And even though Cam knows what to do in case of an emergency, I don't want to traumatize the sweet boy.
I received good news from the gynecologist. This week, I had a uterine biopsy, and it just came back normal. Praise the Lord -- because I don't think I could handle uterine cancer at this time. I'm still trying to break up with lupus...
Well, like I said -- I'm grounded to bed and it happens to be time for my Dilaudid. The house is fairly quiet -- so I think I'll try to get a nap in.
Much Love,
Michele
Apparently I've trained that boy too well. Cameron volunteered to stay home and babysit me today as Bill had a meeting at work this afternoon and some prep work to do before it. Cam and Molly have all of next week off of school for Thanksgiving Break, and apparently he was doing "nothing" in all of his classes today -- so Cam got the job by simply volunteering. Being on all my regular meds + high dose IV steroids + Dilaudid and Fentanyl, I am considered a risk to myself -- I can't imagine why??? I'm not going to take it personally that Cam's wearing a shirt that says: "You don't have to be crazy to work here...They'll train you."
Anyway, I slept fairly well last night with the help of pain meds and zofran for the vomiting. I can definitely feel the chemo -- I am not throwing up, but the idea of food is completely repulsive. So I am just focused on staying hydrated. My nurse, Mary, came at 9 a.m. this morning and adminstered my 2nd dose of IV solumedrol. After 2 days and 2 grams, I am flying high in a drug-induced stupor and not looking forward to the crash. After she left, I got up and was cleaning my already-clean-enough house and doing laundry. I managed to get in a bath and even paint my nails, before I was escorted back to bed by Cameron and grounded for the rest of today...he has Bill, the doctor, and nurse to back him up...so I will listen. Plus, he told me he's afraid I'll do too much and pass out. And even though Cam knows what to do in case of an emergency, I don't want to traumatize the sweet boy.
I received good news from the gynecologist. This week, I had a uterine biopsy, and it just came back normal. Praise the Lord -- because I don't think I could handle uterine cancer at this time. I'm still trying to break up with lupus...
Well, like I said -- I'm grounded to bed and it happens to be time for my Dilaudid. The house is fairly quiet -- so I think I'll try to get a nap in.
Much Love,
Michele
Thursday, November 18, 2010
TODAY...
Hi Friends,
I have no energy -- but I have promised to blog, so here is the summarized version.
Yesterday...
Saw Dr. Modlinger, the cardiologist -- had more heart testing and was hooked up to an "event monitor" -- press the button every time you have chest pain and then the cardiologist checks to see what your heart is doing at the time. Had a lot of chest pain today -- so I can send the event monitor back to Thousand Oaks tomorrow. The thought is that my high blood pressure/rapid heart rate is just a response to the extreme lupus pain -- but we'll see.
Saw Dr. Cohen, the rheumatologist -- who thought I looked awful (Thanks:-) and said I'm still in a major flare. We already did 2 doses of IV solumedrol, but he ordered a third and higher dose, a 3-day course to start today. Thankfully, it can be given at home via the home nurses. Also, I was to stick with the original plan of doing round #2 of Rituxan (chemo) at the hospital today. But it will take 6-8 weeks to get full relief from the chemo. So for now, I started back on Dilaudid plus the Fentanyl pain patch for pain relief. Bye bye percocet:-( You're not strong enough for my swollen brain pain.
Today...
Got up and sent the kids off to school by 8 a.m. Then left for Los Robles with Annie for chemo.
Rituxan chemotheraphy from 10 a.m. - 2:00 p.m.
drove home from Thousand Oaks
2:30 p.m. -- met my home nurse Mary at my house for IV Solumedrol and port care
after about an hour of treatment, Mary left...and I went to sleep,
woke up in pain -- took pain meds, ate Little Caesar's Pizza for dinner,
looked at the picture of the beige truck Bill and Isaac just bought to replace our Expedition.
And now back to bed for the night, I hope...Mary is coming back at 9 a.m. to do Day #2 of steroids...Hurray:-)
I blogged...good job for me:-) I am SuperMom, which makes sense since I am married to SuperMan.
Love, Shel
I have no energy -- but I have promised to blog, so here is the summarized version.
Yesterday...
Saw Dr. Modlinger, the cardiologist -- had more heart testing and was hooked up to an "event monitor" -- press the button every time you have chest pain and then the cardiologist checks to see what your heart is doing at the time. Had a lot of chest pain today -- so I can send the event monitor back to Thousand Oaks tomorrow. The thought is that my high blood pressure/rapid heart rate is just a response to the extreme lupus pain -- but we'll see.
Saw Dr. Cohen, the rheumatologist -- who thought I looked awful (Thanks:-) and said I'm still in a major flare. We already did 2 doses of IV solumedrol, but he ordered a third and higher dose, a 3-day course to start today. Thankfully, it can be given at home via the home nurses. Also, I was to stick with the original plan of doing round #2 of Rituxan (chemo) at the hospital today. But it will take 6-8 weeks to get full relief from the chemo. So for now, I started back on Dilaudid plus the Fentanyl pain patch for pain relief. Bye bye percocet:-( You're not strong enough for my swollen brain pain.
Today...
Got up and sent the kids off to school by 8 a.m. Then left for Los Robles with Annie for chemo.
Rituxan chemotheraphy from 10 a.m. - 2:00 p.m.
drove home from Thousand Oaks
2:30 p.m. -- met my home nurse Mary at my house for IV Solumedrol and port care
after about an hour of treatment, Mary left...and I went to sleep,
woke up in pain -- took pain meds, ate Little Caesar's Pizza for dinner,
looked at the picture of the beige truck Bill and Isaac just bought to replace our Expedition.
And now back to bed for the night, I hope...Mary is coming back at 9 a.m. to do Day #2 of steroids...Hurray:-)
I blogged...good job for me:-) I am SuperMom, which makes sense since I am married to SuperMan.
Love, Shel
Tuesday, November 16, 2010
TODAY IS BROUGHT TO YOU BY...
Dr. Silverman and Michele's uterus...
Hi Friends!
I'm trying to get back on the blogwagon -- so here's what's going on today. I just sent the kids and Bill off to school and work, and I am waiting for Annie (my Alice) to come and drive me to see the gynecologist, Dr. Silverman. (Always fun, isn't it ladies???) Today I need to have a uterine biopsy done as I've had some unexplained bleeding after menopause and apparently my uterine lining is much thicker than it should be. I am followed closely by the gynecologist, because the chemotherapy (Rituxan) which is currently saving me from my lupus -- ironically puts me at increased risk for breast, cervical, uterine, and bladder cancer.
So, that will be our fun outing for today. I am really not feeling well. Super bad lupus headache and chest pain. So, yeah -- why not throw in messing with my uterus??? Wednesday I go back to the cardiologist and to see Dr. Cohen. And Thursday I am doing my second cycle of Rituxan at Los Robles. And then on Monday, the 22nd, I am seeing the neurologist for brain testing. I also have a cystoscopy scheduled with the urologist that day. If you've never had a camera put into your bladder just for fun -- well, that's probably a good thing:-) I don't recommend it, but I do it cuz it would be silly to die of bladder cancer which is usually easily treatable.
Bill is looking for a replacement vehicle to buy since I torched our Expedition. We have 2 more weeks left with our rental of an Expedition -- so hopefully, he'll find something soon...
More tomorrow, I hope ---
Much Love,
Shel
Hi Friends!
I'm trying to get back on the blogwagon -- so here's what's going on today. I just sent the kids and Bill off to school and work, and I am waiting for Annie (my Alice) to come and drive me to see the gynecologist, Dr. Silverman. (Always fun, isn't it ladies???) Today I need to have a uterine biopsy done as I've had some unexplained bleeding after menopause and apparently my uterine lining is much thicker than it should be. I am followed closely by the gynecologist, because the chemotherapy (Rituxan) which is currently saving me from my lupus -- ironically puts me at increased risk for breast, cervical, uterine, and bladder cancer.
So, that will be our fun outing for today. I am really not feeling well. Super bad lupus headache and chest pain. So, yeah -- why not throw in messing with my uterus??? Wednesday I go back to the cardiologist and to see Dr. Cohen. And Thursday I am doing my second cycle of Rituxan at Los Robles. And then on Monday, the 22nd, I am seeing the neurologist for brain testing. I also have a cystoscopy scheduled with the urologist that day. If you've never had a camera put into your bladder just for fun -- well, that's probably a good thing:-) I don't recommend it, but I do it cuz it would be silly to die of bladder cancer which is usually easily treatable.
Bill is looking for a replacement vehicle to buy since I torched our Expedition. We have 2 more weeks left with our rental of an Expedition -- so hopefully, he'll find something soon...
More tomorrow, I hope ---
Much Love,
Shel
Sunday, November 14, 2010
MAYBE IT WAS MORE THAN JUST A BUMP IN THE ROAD???
Hi Friends!
It was more like a fiery crash of the road...and then my truck exploded...
There's a reason I haven't blogged for a while. First, I came down with pericarditis and was hospitalized. Basically the lupus attacked my pericardium (the lining around my heart) causing severe pain, swelling, and some fluid built up. My blood pressure and heart rate were super-high. I spent several days in the hospital on high-dose steroids, anti-inflammatories and heavy-duty pain meds. I was then sent home to follow up out-patient. Now I'm used to this type of thing -- lupus is a systemic disease in that it attacks all of your systems. So, I needed to follow up with several specialists...
And then on my way from one doctor to the next in Thousand Oaks -- and yes, I was driving myself, and yes I was cleared to do so, I appear to have suffered a catatonic seizure while driving. I became disoriented, confused, and was completely unable to move. I was in the SUV alone when it left Rolling Oaks Drive, shearing off a electrical transformer and crashing at high speed before the vehicle burnt to the ground while I watched. It was rather dramatic to say the least. I had covered my day in prayer and God truly sent angels to protect me. I was pulled out of our Expedition, and put in a lady's car who then drove me away from the fire. We waited in front of BorderLine for the Los Robles ambulance to come get me, and we called Bill to tell him I was OK considering what had just happened.
I suffered chemical burns to my arms from the airbags, bruising from the seat belt, and a concussion from my head hitting the seat back and the steering wheel. But thank God, I didn't break anything (shocking considering my osteoporosis) or have a problems with my port which was hooked up with a needle for chemo/testing. It nicely stayed in place.
So, the basic concern is that I seem to be having seizures -- not a good sign for someone with a history of lupus attacking the brain. Obviously my days of driving are over, and we're just glad that a truck can be replaced. I was immediately switched off of my methotrexate (that remission was way too short if you ask me!!!) and put back on the more aggressive Rituxan chemotherapy. I have had home health nursing here providing me with IV steroids and hydrations and monitoring my general health, because I really really really don't want to go back to the hospital.
Bill's parents came and stayed with us for a week. They were a huge help and a fun distraction for the kids. We celebrated my 40th birthday on Friday, Nov. 12 -- and it felt like a huge accomplishment.
I really don't know much except for the lupus is once again in full flare. Tomorrow I am meeting with the cardiologist to discuss its effects on my heart. Tuesday I am having a uterine biopsy, because of some female abnormalities. Wednesday I meet with Dr. Cohen to discuss and plan out our lupus kick-butt treatment. And Thursday, I am scheduled for Rituxan (chemo) at Los Robles. I am also waiting to hear when the neurologist can squeeze me in to discuss my brain issues... it's almost funny:-0
Anyway, that's what I know...meanwhile I am supposed to be resting in bed. And since Bill surprised me with a laptop for my birthday -- I now never need to leave my room...I have been allowed to take a short walk up and down my street each day so that I don't have circulatory issues...but other than that -- my chest and head hurt too much to do anything else.
I'll blog again when I know something pertinent. The pictures of the accident and my 40th birthday are up on FB. Sorry, but I do not have the energy to post pictures on this blog anymore.
Much Love,
Michele
It was more like a fiery crash of the road...and then my truck exploded...
There's a reason I haven't blogged for a while. First, I came down with pericarditis and was hospitalized. Basically the lupus attacked my pericardium (the lining around my heart) causing severe pain, swelling, and some fluid built up. My blood pressure and heart rate were super-high. I spent several days in the hospital on high-dose steroids, anti-inflammatories and heavy-duty pain meds. I was then sent home to follow up out-patient. Now I'm used to this type of thing -- lupus is a systemic disease in that it attacks all of your systems. So, I needed to follow up with several specialists...
And then on my way from one doctor to the next in Thousand Oaks -- and yes, I was driving myself, and yes I was cleared to do so, I appear to have suffered a catatonic seizure while driving. I became disoriented, confused, and was completely unable to move. I was in the SUV alone when it left Rolling Oaks Drive, shearing off a electrical transformer and crashing at high speed before the vehicle burnt to the ground while I watched. It was rather dramatic to say the least. I had covered my day in prayer and God truly sent angels to protect me. I was pulled out of our Expedition, and put in a lady's car who then drove me away from the fire. We waited in front of BorderLine for the Los Robles ambulance to come get me, and we called Bill to tell him I was OK considering what had just happened.
I suffered chemical burns to my arms from the airbags, bruising from the seat belt, and a concussion from my head hitting the seat back and the steering wheel. But thank God, I didn't break anything (shocking considering my osteoporosis) or have a problems with my port which was hooked up with a needle for chemo/testing. It nicely stayed in place.
So, the basic concern is that I seem to be having seizures -- not a good sign for someone with a history of lupus attacking the brain. Obviously my days of driving are over, and we're just glad that a truck can be replaced. I was immediately switched off of my methotrexate (that remission was way too short if you ask me!!!) and put back on the more aggressive Rituxan chemotherapy. I have had home health nursing here providing me with IV steroids and hydrations and monitoring my general health, because I really really really don't want to go back to the hospital.
Bill's parents came and stayed with us for a week. They were a huge help and a fun distraction for the kids. We celebrated my 40th birthday on Friday, Nov. 12 -- and it felt like a huge accomplishment.
I really don't know much except for the lupus is once again in full flare. Tomorrow I am meeting with the cardiologist to discuss its effects on my heart. Tuesday I am having a uterine biopsy, because of some female abnormalities. Wednesday I meet with Dr. Cohen to discuss and plan out our lupus kick-butt treatment. And Thursday, I am scheduled for Rituxan (chemo) at Los Robles. I am also waiting to hear when the neurologist can squeeze me in to discuss my brain issues... it's almost funny:-0
Anyway, that's what I know...meanwhile I am supposed to be resting in bed. And since Bill surprised me with a laptop for my birthday -- I now never need to leave my room...I have been allowed to take a short walk up and down my street each day so that I don't have circulatory issues...but other than that -- my chest and head hurt too much to do anything else.
I'll blog again when I know something pertinent. The pictures of the accident and my 40th birthday are up on FB. Sorry, but I do not have the energy to post pictures on this blog anymore.
Much Love,
Michele
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