So I went to see Dr. McHargue (my dermi) today at the New Center One building in Detroit. I really do love this guy. He reminds me of my first dermi who didn’t sugar coat or treat me like I was crazy.
First on my red hands…
If I massage them, the redness goes away. This is one of the many fun things with Lupus and connective issue disorder. This redness goes up my right arm to my shoulder. It doesn’t hurt but it does give me a complex. I don’t know what I am going to do come summer. The dermi pretty much told me it was a mix of my disease plus how cold it has been. He recommended taking Vaseline and covering my hands up at night. He also stated that the muckier the gloves are (after a while), the better absorption the skin will take. Odd huh? I still need to get my calcium and D3 supplements but in due time.
Now the new treatment… I am waiting for my rheummy to call me back but I am going on Benlysta. This will get me off prednisone and help with my skin issues as well. I have red patches on my face as of now and a bit of the butterfly rash.
So here I am now, just waiting. Probably won’t hear anything until Monday (today being Thursday at 4:42pm). I will update when I know and can put it into thoughts/words. That’s been hard lately. Have a good night!!
UPDATE: I received an email from my rheummy stating I need 3 tests done. I need an x-ray of my chest, a hepatitis panel (blood work), and a TB test. Not sure if this is a walk in or I need to make an appointment but it has to get for before starting this treatment.
Ah yes…the holidays. That time of the year, for me, I could easily close my eyes and wish it away. The whole season is just one push after another. Push…buy this. Push….Be Happy. Push, push push, push. My life does not consist of all this. Granted, it is nice to have people around to talk to but I have become more cynical towards people…no matter who they are to me. But that’s just me protecting myself and my ‘spoons’. I really don’t need to pretend to be happy.
First holiday to conquer is Thanksgiving. This one is a hard one since we do both families. Eat at one house, eat at another … just like most are doing on that day. Sucks we really cannot bring our boys since it gets chaotic. The next day is usually a recover day since I do not partake of the crazy, bat-shit shoppers. Then there’s the 4 weeks of commercials, holiday shows, and charities bombardment. Makes you wish for January to save you from all that!
Holidays play on my mental well being as well. Even though I am not diagnosed with depression, I do feel it more during this time of the year. I miss my dad, Rest his soul. I miss the fact that I will never celebrate this holiday through my own children’s eyes. I miss the feeling of being wanted and not only for the holidays because you have to. I miss having a simple life…no meds, no complications, no doctors, etc.
I wish I could work so I could have a purpose in life. I really don’t feel like I do. When I sit around the table with folks, I really have nothing to contribute. I just stare at them and politely smile. My life consists of Netflix, watching out the window and taking care of my boys. I’m limited with driving because of drop foot. Everything just makes me so angry inside that I wish I could just scream! I’m grateful for the two friends who I do see and hang out with. I’m grateful for my Internet friends who listen when I want to just crawl under a rock and die. I need a vacation from the holidays. I mean, seriously, who is going to miss me for one freakin’ day? I’m just done with it all. I don’t decorate and my tree stays up all year (it’s a live tree). My mind doesn’t feel right and it’s getting angrier.
So bring on the holidays of ‘pretend happy’. I’ll hide in my coffee and pumpkin pie. Have a good cry when I’m alone (which is a lot). Hope, as each day passes, the pain lessens in my body and my mind.
Sorry for the long hiatus of nonposting. It’s summer and we camp. I try to enjoy this quality of life I have, which isn’t that much. Between having digestive issues, I also have breathing problems and now my hands are acting up again! What the Fuck, Life? I just don’t know what to do anymore. Yes this is going to be a bitchy post so if you don’t want to hear it, best close it now. You have been warned….
First let me say, lupus just sucks. It sucks the life out of me, joy and hope. Just when I think I am two steps ahead, it pushes me down the stairs. Just tired of fightingo and being ‘strong’. I made my dermi appointment at HFH for their clinical. My hands feel very painful and they are blistering. The fucking joys of lupus. Plus, it’s starting to go up my arms now. GREAT! I’m just tired of this. Just please stop and let me catch a break! Lately, I just want to sleep. Depression does that. Seriously want this all to end and I don’t care how it happens.
As I write this,I just feel less hopeful anyone can help. I don’t want to sound ungrateful for kind words but they really don’t help with pain. This will probably piss a lot of people off but it shakes my trust in God as well. I saw my dad suffer and it just makes me so angry and ever since he died, my faith has not been the same. Really cannot believe there is someone taking my burdens. Umm…hello? If that was true, take this damn flare. OOps…..still there. No such luck.
So here it is..to you life! *MIDDLE FINGER* You can suck it because I am done with all this bullshit.
After having such a bad experience with the dermatologist at the HF Troy campus, my rheummy recommended to go to the New Center clinic. She told me they are familiar with lupus. They are only open once a month on Fridays. So I thought, what the hell why not try this. So I did…
First, let me say they (the staff) were very friendly and didn’t push me along. They first person I saw was the resident and she was very attentive. She listened to my medical history and asked lots of questions too. After she and I talked, she came back with the doctor and doctors-in-training and my rheummy’s backup doctor. It was very crowded in this little room. Anywho, the doctor looked at my scalp and my hands. Of course, my sores were gone. Luckily, I did take a picture but it wasn’t good but he got the idea. So the sores on my lips are going to be treated as cold sores since I am on immune suppressants. I haven’t picked up my Rx yet but he told me that the side effects are very minimum (headache and sleepy). But it was so nice to have someone medically listening instead of pushing me along. I have to follow up in 2 months to see how I am doing on this cold sore antibiotic.
So today is a good day, medically and physically. I love these good days since I can do things that I normally don’t. I think my fitbit helps me move too with these solo challenges.
Thanks for reading and stopping by. I do appreciate all the good thoughts to help me and other Lupus warriors get along. Now….I am going to find me some chocolate and enjoy this afternoon before the rain comes!
I know it’s been a while since I have done this. I have been dealing with very sore hands and fingers that didn’t allow me to do much. It’s not a great picture but those little sores that were on my fingers made life hell. I went to a dermatologist (dermi) and she went off the deep end telling me it was blood clots thrown by my heart, I needed a TEE scope and $100 of ointment that didn’t do jack. Clearly, I was upset and went to this heart specialist who took about 14 viles of blood. After all that, no one called to tell me what it all means. Thankfully Henry Ford has MyChart and I can kind of follow and ask questions. So end result to this……..Heart is great. Well that’s good news but why do I have this on my hands?!
I ended up calling my Rheummy. I told her about the debacle with the dermi and whatnot. Plus I told her no one gave me any insight on the blood work. She looked at it and said I was ‘normal’ with the blood work for a lupus patient. Then she put me on steroids to help with the inflammation. You know what happened? The steroids worked! A $3 bottle of little pills worked! I knew I should have went to the rheummy first! But now, I have almost full use of my hands and things don’t hurt as much, even when they are cold! YAY!
My other fun is my brace which I refer to it as Frankenfoot! I received it just before Christmas of 2016. I decorated it, as you can tell. It does help with longer walks and it keeps me stable but it gets heavy after a time. Who would of thought a piece of plastic would get that heavy? My next adventure is to hook up my driving assistant quickstick so I can do my own little errands and get the hell out of the house without depending on others. I’m grateful for people that do help me but there are times I just want to go to Taco Bell and get me some food and go home without disturbing others’ days. With my hands healing and nicer weather approaching, my mood has been better. So I need to get my independence back!
Next is our camping season! This I cannot wait. This will be the first summer without cancer treatments and I can enjoy without the side effects looming. I still get some but they are not as worrisome! One trip will be to the Porcupines (UP) so we have to cross the Great Mack bridge. I’m not a fan of it but you gotta do what you gotta do! I forget our other trips but we do have a few booked! It will be so nice to be able to eat and share laughs this summer. I can tell from last year’s pictures that I was feeling bad. I love taking pictures but there were few. I regret that but, again, not feeling well makes you just want to curl up and sleep.
So I think I caught up on everything. I’m hoping everyone is doing well! Take care and talk to you soon!
Today I went to Henry Ford’s Rehab to get my right leg evaluated. The PT guy, Ron, did all types of flexing and strength tests. Overall, I failed. I have barely any strength in my right leg and foot.
I also have a rx for an ankle brace to help with balance and to get me to walk ‘normal’ again.
Anywho, I start PT next week and I have to go twice. They are going to strengthen the muscles since they are weak. He told me that I will still have the neuropathy but the PT can help keep it from getting worse.
I have my EMG after thanksgiving and I really don’t look forward to that. The whole needle thing freaks me out.
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.