So today I had my neurologist appointment. Last minute cancellation and I got it! WOOT!
Anywho, The doctor did the reflex, strength and vibration tests on my hands and feet. So weird not feeling anything on my feet. Still freaks me out. So the next step is a head MRI (BOOOOOO!) and an EMG (DOUBLE BOOOOOOOO!) Glad I still have some xanax left from prior MRI testing. Plus Fairlane has the open machine as well! YAY!
I still have the red bumps on my big toes and fingertips. Plus I still have the ucler on my roof of my mouth so eating is a challenge. I am seeing the dermi next week, Friday. This Thursday I get to see the dentist and cannot wait for that. This Lupus has weakened my teeth.
I don’t tell you all this so you can feel sorry for me. I really don’t want that. I want you to educate yourself on Lupus and know. And please do not tell me there is always someone else who has it worse. Well you know, this is my worse and I am honoring my own body and self. No one knows what it’s like in someone else’s shoes. Have empathy and compassion for each other. I know I forget sometimes to show kindness but we all forget at times.
I’m going to enjoy this day with the sunshine and 64 degrees in November! Remember to honor your own self and be kind to each other.
Last night I got to thinking about what my doctors actually do for me. Granted, I do have a couple of good ones that listen but do they….really?
Example, when I went to the ER beginning of 2016 due to inability to breath, all I was offered was an uncomfy bed, ‘normal’ tests and yet no closer to what the hell is going on with my body. I told the ER doc it is probably lupus flaring up and he had no idea what I was talking about. Awesome! So instead of sending me home, they sent me to Henry Hood for an EKG. I kept telling them you are not going to find anything but hey, it’s only my body. So of course, heart is healthy. I’m just done with doctors and how little they do help. I thought for sure they would help with my tachycardia or something. Nope, just go home and here’s the bill.
Now that I have new symptoms, I’m so leary of going to see another doctor. More tests to show nothing that I have to pay? Fuck that! I did get my CT done and no cancer was no where. But now, I have gas build up in my intestines making it painful to burp, moments of crazy BMs, and I have dropped down to 120#.
Tired of stepping on these legos but I guess I am getting used to the pain of the corners. So if you are wondering if I am in a good mood, chances are….no. I just want my normal life back when I could do things without feeling winded, or muscles sting, focusing is incredibly hard. If you talk to me and my eyes glaze over, I’m really trying to pay attention but I lost that battle. Now I just wait to see what other symptom is going to rob me of my freedom.
I follow a few blogs to see what’s going on and to get inspiration on write a new post. This one was a challenge but it is needed to be written down and for me to see it. We all need to be better to ourselves. I know I am constantly negative and for some reason, it is easier to believe the the good. So here are a few awesome things in my life that are my superpowers! 🙂
- I can adapt – Most of my young adult life, I worked at a temp agency. This means odd jobs, as well as, office jobs. Some of those jobs I never knew existed until I received my orders. This also is connected to my chronic illness. I was diagnosed in 2004 and it was a mourning time. After that, I had a wedding to plan, overtime to work and my life was going to change from single to married. I thought Lupus was going to keep me down but no, it just made me adapt to a new life. I still look back at my prior life but quickly look forward to now. I have a good group of doctors and great support group.
- I am curious about the people I see around me – When I go out, I always wonder about the person who is waiting in line with me or just passing me by. I wonder what their life is like, do they have heavy burdens, I wonder if I could comfort or help.I know there are millions of other with chronic illnesses and I would love to do anything in my spoon reservoir to help.
- Meet some incredible people – The Internet has introduced me to some folks who understand and are just plain awesome! Besides already having a great support from my friends at home, these people offer their spoon when I am in need and I do that for them as well. I never knew an Internet relationship can be so helpful and fulfilling. I would love to meet some of these great people as well to wrap my arms around and call them family.
- To enjoy life – For me, this is still a hard one but I do try. In the summer, we do camp. The preparation does cause me some anxiety but we camp with another couple and they do help ease my tension. No one person does everything. We share in it all. Every little aspect in life needs to be enjoyed. It’s those little things that make life worth it. A shared joke. A sunset/sunrise. Watching my dogs sleep. Baking cookies. All these moments are savored for me.
These are just a few that popped in my head but I know there are probably more. Life has definitely delivered some curve balls and I have missed a few. But the great thing, I have hit a couple and accepted where they went. I’m learning that life does have humor and love, I just have to look for it in everything.
Finally saw a Urologist today. Actually this doctor specialty is the female urology parts!
Anyways, when he first entered the room, he introduces himself (Dr. Richardson) and tells me that he is a hugger. I got to hug my doctor! Love that! So we discuss my problem and what not. I felt very at ease with him and not rushed into doing anything. So, of course, there was an exam to see what could be the problem. He thinks it is the outer area that is inflamed.
He gave me three things to do:
- Dance/meditate (MBSR). I wanted to learn how to meditate and maybe this will help my mind not be so concentrated on the pain. Pretty much, how he explained it is that I have to accept it. He is a no-nonsense doctor and told me it won’t be easy.
- I have to wash the urethra area with water or Epson salts. Well, I have water handy so that will have to do.
- He asked me to try the lidocaine 2% to see how I react to it. I did have estrogen and it burned so he wants to know how the lidocaine reacts.
So that is what I have to do at this moment. We are doing baby steps to see what happens. I’m so glad I made the appointment and glad my mom got to go with me. I feel a little at ease but I know I have to relax more and not let everything get to me.
The doctor has a thought that it could be Vulvodynia (Info on vulvodynia). I’m discovering all these new diseases that I never knew existed! How about that!?
I know I have posted something similar but I think it deserves to be heard again. I have been through two rounds of radiation to ‘kill’ cancer cells. Well, this ‘miracle cure’ does not only kill those cells, it kills healthy ones as well. On an average person, this may be ok and bounce back…I am not the case. My immune system is already compromised! My body was not healed from the first time when they started on the second round. So the side effects were twice as bad.
Why am I writing about this now? Because as I type, I am still in pain from urinating almost 30 minutes ago! My oncologist gave me this cream that doesn’t help. It burns like shit putting it on but that’s it. Great, more pain! Speaking of the oncologist, I see him in April, probably order a CT. I just wonder if there is any other options than poisoning a body that cannot handle another treatment. This is making my quality of life miserable! I hate being afraid of the bathroom, hate being afraid of drinking or eating. Everything I look at gives me fear of what will happen if I ingest that. Unless you have been through it, you won’t get it. Best way I can describe this pain in my urethra is something like this. If you ever had a catheter and instead of them easily taking it out, they rip it right out. Yup, you see those stars? That’s what I see when I pee every…single….time. It’s depressing, makes me so sad and I have become isolated. I’m done. Just let cancer take me. These side effects are just not worth it. I miss me. I can understand why cancer patients give up on life. I’m at the point. When I talk to my dr, if he cannot give me any other option besides this poisoning, I don’t want it. I’M DONE! Yeah, it’s selfish but again, you do not know what I go through with this pain, mentally and physically, everyday.
Now I have this dumb lazy eyelid. Thankfully it doesn’t hurt like last time but definitely can tell it is not opening all the way. I take Benadryl for that to keep from getting too swollen. Plus it helps me stay asleep along with my Ambien. That’s all I want to do is sleep and hide in my bed or in my room. I really don’t find much joy in things anymore. No sex life whatsoever because my drive is gone. I wouldn’t blame hubby if he left me. Who would want me? I’m a walking medical bill that skyrockets into the 10 thousands. I’m afraid to tell anyone of any other problems I am having since it may lead to another stay at the hospital with them not finding a damn thing.
Just wish I could catch a break at some point.
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 figure I would do the before video while I was thinking about it. I will do the pictures probably tomorrow with my good camera. I dislike camera phones.
Once I do start, I will put up the pictures and probably another video as well. Hope this will strengthen my hair and grow some of those patches back.