Lupus is a cruel mystery. I am a true testimonial to that. Here, I thought, I could start doing cute hair styles and be ‘girlie’, Lupus starts up with the hair loss cycle again. As before (meaning before I shaved my hair off), I tried to do the comb over and it frustrated me more than anything. The thought of ‘is that piece covering?’ lingered inside my head. I have heard the whispers and seen the stares from people and it hurts. People, if you are curious, then just ask! Sheesh! There is a polite way of asking versus staring at me like a freak. Unreal.
Anywho, back to now. So, I thought I would try to let the top grow out and shave the sides. Well the shaved sides worked out great but letting the top grow long is just a recipe for disaster for me. I forgot about knots in the hair which lead to finding hairs in my comb (saddness #1). I run my hands through it and find a handful of hairs (saddness #2). Looking in the mirror and seeing these glaring bald spots staring straight at me (saddness #3). It made me really sad that my hair is falling out again. I don’t know if it is the styling products, hairdryer or my last coloring did it in but no matter how you look at it, it’s falling out. I have said to many people that I am not attached to my hair but I was looking forward to having something. But yesterday was my last straw! I was steps to shaving it all off because I was tired of trying to cover. Thankfully, the woman who does my hair has no reservation in doing what I want. I told her I want it spikey and I understand that my spots will show. Hell, they show now! What’s the difference? At least, when I leave my house, I know the spots will be visible and I expect that. Not as before, I was afraid to wear my hat because it would mess up my hair or the wind or whatever. Now I can just be me. It is a freeing sensation since I always wanted this haircut and was told no so many times. But now I have it and I am me.
Yes, it is sad that my hair started to fall out again. I figure Lupus does go through cycles and this is just one of them. I do mourn for my former self…a lot. I wish for not having so many pills, doctors, health problems, etc etc but then I think, I met so many great folks, learned so much about autoimmune (not just Lupus), I walk for the causes.
So today being Friday, I’m going to enjoy Friday. It’s only hair and if people want to stare, maybe I will wave back if I catch them looking at me. 🙂
I really don’t know what it is about this morning but something is off. Not really sure if it is my body or my mind. It is just sometimes my mind feels like it is in a cloud and there is no way of dissolving it. Maybe it is Lupus Fog where my concentration is for crap but it’s 7:30am, what am I concentrating to get fog from? Drinking coffee with vigor? I know I am a worrier and a high running person but today really doesn’t feel like that.
I often wonder what would happen if we didn’t have Facebook. I know I would not be connected to the wonderful friends and support system I have now. But there is so much anger and bad news every time I turn it on. Someone got shot, a fire, animals being abused, children missing etc. Don’t want to get involved with the politics! So I just hide them (the posts, not my friends) all. Maybe that is making me feel depressed and not wanting to care. I really do want to get tested for depression. A long while back, I did see a therapist and she was awesome! She had me do homework and journal each day until we met. Then she got a better job, which I am happy about, but now looking for a new therapist and trusting them, is so hard. In the back of my mind I’m thinking, is she going to leave again? Why put my heart and soul and then she abandon me? Yup, this fear is keeping me back. It sucks. Which goes back to my off feeling. Brain feels all fuzzy and I really just don’t care about other people’s news (good or bad). It’s like they can tell me X, and I just look at them with blank eyes as it goes over my head. Maybe it’s comprehension and fog.
Maybe I need a hobby since I sit day in, day out alone at home. Today, I am going to get my dogs accustomed to their ecollar. No real training, just 20 mins on then off. They only use these while we camp but I want to teach them to walk again without the pulling. i figure by Spring, we can start training since they will be used to having it on their body.
I am just hoping for a good day today. I try to think positive, good things, etc. I do some things around the house and then BAM, some joint pain or my favorite, the fallout from radiation in the form of I cannot pee without pain!
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!
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!
It’s about 6am here in Michigan and I was curious about starting a new site about my adventures in Lupus-land and Cancer-vania. I am breaking away from Blogger since WordPress has more flexibility and whatnot. I’m still keeping Blogger since I have many years involved and ups/downs. I just need a fresh start…
So being fresh, let’s start with today. I am getting myself back into walking. Not so much for weight loss but to not lose muscle. My muscles have atrophied a bit from treatments. Also, I am almost at the end of my prednisone regimen. I was on it for my breathing/lung/heart issue (Thanks Lupus!).
I finally got my hair cut the way I wanted. I got my pixie cut and learning how to style is a bear but I am learning! I love playing around with it. It’s been a while since I got to do that! Also, I am messing around with eye makeup to make me feel pretty. I know it’s your inside beauty that matters but damn it, I want to look in the mirror and not see BLA. I know I look good without makeup but it just makes me feel girlie. I like that!
After cut and color
So this is the first picture is back in 2012 when I was losing my hair. After a while, I started to shave it off since there was more missing than hair. AFter a few years, it started to grow back and let it just grow. It was baby fine so I kept it real short. Another year goes by and there I was with thick hair! WOW! I got excited and blonde it out and added purple! My hair is a natural dark brown so I decided to go back to it. At least when the roots grow I won’t see it! BONUS!
I may do some camping blogs on here. It was hard to do them on Blogger. I kept fighting with the photos and how they were arranged. I guess I will find out with this! So that is my first post. Now to play with themes and colors to find just the right look!