I’m not there yet but during in my bed drinking my tea awaiting my first benlysta infusion. Trying to hydrate so my veins will be easier for them to find. I will update this blog as my day goes on but i just wanted to start this. I have podcasts,movies,music and my Italian work ready to go!
IV is in
Well I am all finished with #1 and I do not have any weird reactions. I am just tired but that is an everyday thing for me. Now I have to get my pups tired and bird some play time so I can chill out on the couch and watch some Netflix. Next appointment is April9 at 1030am. Fun times!!
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.
I think I have finally eased my flare from our trip. I anticipated some form of flare but I do not regret it. I enjoyed being with John as he made all the plans. I have a lot of cool memories from it all, even the driving. I have my memory box decorated and my last piece are the photographs I sent out.
But now,things are quiet and back to normal. At least next week I get to do bfast with my girls, another bfast date with family, and the last bfast date with my dermi. I’ll just bring some mini muffins or something.
I’m hoping for some kind of forward thinking with the dermi. He may start me in benlysta since nothing else is working at the moment. I still have red rashes on my hands, fingers, arms and face. Tired of being on prednisone. Tired of the whole song and dance to give me a quality of life. What quality? I’m a slave to my digestive system and bladder. They run the show.
I am going through a dark patch in my life right now. I am on disability and feel isolated from everyone. I know it is not their fault since they get to go to work and interact with other human beings. I’m not so lucky. I have a few things that keep my sanity levels from plummeting and I wanted to write them down so I can remind myself on what to do. Kind of like a life preserver, if you will.
My favorite music is from the 70s but I do like any kind. It helps to move around and otherwise, lift my spirits for that time.
They need to be taken care of, as well as myself. They get me up to go outside and play. Sometimes I wish I was a dog so I have absolutely no worries, especially if I had a very caring owner.
I have a mess of these and in all types. They help with keeping me focused on what I am doing right now. No worries about my ‘dark cloud’. Just me, a book and colors of pens/pencils.
My blog is like my friend that I can say anything to and not judge or get upset. If I want to write about my good or bad days, I do it. Some people who follow don’t like the ugly truth but it’s there. We all get them…I can just say them
These are just a few mind distractions that I use. I’m pretty sure I am missing a few but these are my go-tos. If you have any, please let me know in the comments. I would love to know how you handle your ‘Dark Cloud’.
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.