Today marks my 12th year of being diagnosed with lupus. It’s been a long journey of doctors, tests, symptoms, pain, etc etc. I have adapted and educated myself and others about this disease with no cure. I am on medication for the rest of my life with spots of prednisone usage. The thing I really despise of this disease is its own spontaneity. What I mean by this is that it is hard for me to plan to go out with friends…even if it is out for breakfast.
During this journey, I met a lot of people who are doing the same thing..battling lupus. I met some great friends and rekindled friendship with others. Lupus has shown me how to adapt and listen, truly listen, to my body and what it needs. This is a gift no one gets it unless they get it.
Now to write down my list known as my ‘Dream Team’. Some of the doctors are my cancer but work with me because of lupus.
Dr. Bishnoi – Rheumatologist
Dr. Hanna – Oncologist
Dr. Elshaikh – Radiologist
Dr. Nalamati – Colon
Dr. Katukuri – Endo
Dr. Panchagnula – GP
Dr. Mott – Orthopedic
Dr. Kerr – Dermatologist
My ‘Dream Team’ is all out of one hospital, thankfully, so that I can keep my records straight. Plus with Henry Ford’s My Chart, I can see my test results, appointments and ask questions. No this is not a plug for them, just grateful to have them and this technology!
So here’s to another 12 years of the journey and to see where it leads me. Hopefully, not another ER visit!
This is the view of our backyard. We got about 3 inches of snow but most of it was slush and wet crap. I did clean it up last night. Good thing too because it could have froze and made more of a mess to deal with. So again,I was out shoveling and cleaned up the front and the street in front of our house. People think I am nuts for doing that because of being so wet but IF the plows come by, I won’t have a big ass mess to clean afterwards.
So here is the front of our house and you can see how anal I am about my how clean my front has to be. So at least it is melting and I won’t have ice all over the place. It really drives me crazy to see tire tracks on my driveway. I don’t understand my thinking why but I just sends me over the wall. So today is a ‘stay home’ kind of day. I had the Tubby’s people deliver me some yummy food and I took some Norco for the pain I will have later on from shoveling. Oh it is so much fun being me! This weekend is supposed to be in the 40s so most of this will be melting anyways.
Around the mitten, my friend in Ortonville was dumped with 12 inches of snow with waist deep snow drifts. We had those the last two years and I really don’t want that anymore. I’m okay with cold temperatures. Anyways, I’m going to finish up my lunch and curl up with my Netflix! YAY HOUSE!
I know I have this in my other blog but it would be nice to have all my diagnosis and other fun stuff here.
First, I was dx with Discoid Lupus in 2004 (Feb) by my dermatologist (dermi). He was treating me with alopecia with cortisone shots in my scalp. It was a series of maybe 10 areas he did and this went on for months, every other week. Let me tell you, it sucked! I wouldn’t wish this upon anyone! As time goes by, the dermi noticed the skin area was scaly. So he ordered a punch biopsy and VIOLA! The test came back for Cutaneous Discoid. Pretty much is a skin autoimmune disease. My dermi then tells me he is not familiar with lupus (any form) so he referred me to a few others that could help.
So I went. Did not like any of them. I don’t want a doctor who is going to rush me out of their office. So a few years go back without seeing a dermi…
Life continued onward. My hair fell out in clumps and ended up like this. I ended up shaving it all off because, to me, it looked ridiculous having patches of hair and mostly bald spots. I cried! I did this on my own without having any support system. Ok I had a few folks but my days are spent at home looking at this. It was very depressing. After a while, I bought a few wigs, learned how to use makeup and have a mess of scarves. Life didn’t seem too bad. I mean, it’s just hair. It doesn’t define me. It made getting ready a lot quicker! I adapted and accepted this and eventually it did grow back. I still have spots that will be bare due to scarring but I don’t care. It’s just hair.
In 2013 (May), I went to Ob/Gyn to find out why I was having horrific cramps, dry heaves, monster headaches and really bad cycles. I thought my insides were coming out. The nurse did the pap smear and said the dr will call if there is any abnormalities. Well, the dr didn’t call but his assistant did and the result was cancer. REALLY?! WTF?! So they made me an appointment with an oncologist. Ugh! So I met with the Dr Hanna (love this guy!) and finalized my hysterectomy on June 25, 2013 (had to be at Henry Hood 5:30am for prep). Everything went well, surgery wise. Here are the succession of my poor belly…
My follow up with Dr Hanna was a hard one. The pathology did find cancer outside the uterus so I had to take Magace. It’s a cancer drug that is supposed to shrink the cells.
April. My scalp flared up again. I ended up making an appointment with a HF dermi who specializes with lupus. Not going through a doctor who just doesn’t know how to treat it. Come to find out that cortisone shots are the only way to treat this but they gave me a higher dose and it did the trick. I think after 2 to 3 weeks, the lesions on my head were healing and closing up. This is why I do have bald spots because of these sores. They would itch, I scratch, they leave scars. Oh well!
Same year but May, Dr Hanna did a biopsy from my pap exam/CT scan and found that cancer is back. It didn’t spread beyond the cervical wall but he wanted to do surgery to remove the infected cells. One year later, back on the cutting board (Surgery date- June 30, 2014). After surgery, I was setup with a radiologist to start that mess. Oy!
In July, I started radiation. As time went along, I dealt with side effects from it. Nausea, fatigued, diarrhea. Got through that and then I had to do 3 internal (Brachytherapy). Nothing like having a plastic dildo with radiation up one’s whoha! Got through it and done! YAY!
March. My dad passed away on March 26,2015. He had a stroke about 6, almost 7, years ago and his health had been declining. He finally gave his life to God and did it his way…at home. This is my favorite picture and will always remember him on my wedding day. Still trying to deal with his passing is a bitch.
From then on, I have been dealing with anxiety and depression big time. I don’t want to leave my house. I prefer isolation and I’m ok with that.
In June, I was having a hard time having a bowel movement and when I did, it was all blood. This freaked me out! Went to a walk in clinic and the doctor thought it was hemorrhoids. Got to do a colonscopy and all the doctor could find was inflamed colon. He said there are cells that could be precancerous. Wonderful! A week later, Dr Hanna check and he thought the same. Of course, had the CT scan again and, again, cancer is back but this time in my lymph nodes. Awesome! Back to radiation and all it’s disastrous side effects. My poor body isn’t healed from the first round now I have to endure this…again?! Fishsticks! So again, I go.
So I went through the radiation but ended up stopping about 2 weeks before my finish date. I was in so much pain trying to have a BM! It pretty much held me captive and made me very angry. I was Rx Norco for the pain but I rather find out what the hell is going on than just cover it. My radiologist got me an appoinment with a colon doctor and he was horrible. He rushed me out. Luckily, I had a scheduled appointment with another colon doctor. So my radiologist had me off for 2 weeks and it did some good but I had to finish those 2 weeks. Finally finished them in October of 2015.
In January, I did see Dr Hanna with my updated CT scan and no cancer is to been seen! I do go back in April and probably another scan but for now, I’m happy not having cancer. Just me and lupus…hanging out.
Well I think I caught everyone up. I know I probably forgot a test or a hospital visit but I know it’s in my other blog somewhere. Now to go forward to a new year…now that it is almost March
This is the blog I kept since 2006. It is interesting to see how much has happened during all this time. My first post was in January so it is over 10 years old! I like to go back and refer my doctor appointments to see how much I have improved and knowledge about Lupus. Also, when others have scans or procedures that I have done, I can tell them my experience about it. I don’t rely on my memory for much anymore since it goes more than it retains. Everything gets written down or posted on the ‘fridge.
My last post was about my ER experience which was so bothersome. Granted, yeah, I couldn’t breathe well which lead to high BP, soreness, high HR, etc etc. All in all, they could not find anything in the CT scan, heart checkers, blood and urine. Everything was normal (I use that word loosely). Pretty much laid there and was fed an IV and used their bathroom…oh and ate some cookies. Can’t forget the cookies!
Ended up getting a ride in an ambulance and staying at Henry Hood (Henry Ford Detroit) overnight. At least they had my room ready, got some grub from my hubby and an Ambien! Most of the details are in my Blogger (link on top of this post). I may make a page to keep it easily accessible.
The staff at HF Sterling Heights were good. They took care of me. I just wish I could drop this damn cough/cold. I believe I got it from the ER with all the hackers and flu folks. Now my hubby has this same cough. Maybe we should charge HF?? hahah!
I love Sunday mornings even though most mornings are the same but Sunday has a quiet demeanor about them.
I was playing around, looking for different themes for my new blog and still nothing catches my attention. I really don’t want to build my own. Just too lazy for that and I have done it too. I just want something purple-ish with spoons, since that is my main theme.
I am also going to do is write in this at least once a week (unless something crazy comes up..doc appts, cute dog picture, etc) to give an idea on what is going on for this week. Well here we go!!!
This week we may start getting this house into shape. My cousin’s husband, Joe, is going to do some patch work in our bedroom and bathroom. Before any painting can be done, the attic has to be inspected to see if we need more vents. Our ceiling paint is chipping so what’s the point of painting if it’s going to chip due to ventilation? Personally, I think the paint is just old…say 10 years! Anyways, it’s a start to get this house in shape since we are not going anywhere soon.
Also, this week, I am going to Sally’s Beauty shop with my friend Janice to get hair products to start learning how to style my pixie cut. I have a list of what this one gal did on YouTube and I absolutely love her cut! (xoxoPrettyBitches). I know some I may not get exact but it just takes time and practice. What else do I have to do? I am also ordering some new makeup this week! Such an exciting week! House is getting pretty, I’m getting pretty…..Yay!
I still have this nasty cough that just won’t quit. Sinus drainage and up/down weather don’t mix. Plus with me coughing, it puts pressure on my already damaged bladder. peeing is already difficult to do as it is! Speaking of that, I do go back to my oncologist in April. Probably get another CT and hopefully will be clear to enjoy a summer for once.
Well, I think I covered everything for this week. I may do a video during the week…maybe about the done patchwork, hairstyles or my dogs running around. World is an open book!
I found this picture that is a chronic illness alphabet. It’s cute but so true….unfortunately