Well it’s time to play catch up as I normally do. I wish I could write weekly but nothing really big happens in my life to write a blog. Anyways, here’s a quick update….
First, one of my two banana plants died 😦 Very sad about that but the other is thriving as well in the house. I have a plant light on him and it stays on pretty much the whole day and sometimes nights. I did subscribe to a plant of a month thing and so far I have a Boston fern and a Golden Croton. My jade plant died on me as well but my Kalenkoe (I think that’s the spelling) is thriving well. I am surprised most of the sun plants are doing as well during this sunless and drab winter. Of course my Norfolk Island Pine is doing fantastic! He is looking forward to getting the lights off of him. He thinks it makes him too girly! He’s cute! I cannot believe he’s two years old! Plant feeding will start next month for all! I think that’s all the plant news I have. Oh and my Magnolia tree…. yeah she’s rockin’ it! It’s cold outside and she still has some green leaves! I see a few buds on her as well. I know I will probably get some plant food for her but the experts say give a new plant a year to establish so she will be fed late summer so probably next Spring (2020) I will have flowers! Yay! Ok…. I think that is it!
I am still in the process of teaching myself Italian. I have been doing free online teachings. I am going to dive into reading and next month I want to join a group of all levels to start comprehension. I tried those online sites where you can reach out to others but most use it as a dating site. Even in my description I wrote not interested in dating, just talking and learning Italian. It’s a slow process but I’m ok with that. I know more than I think. I use Memrise and when the speed memory comes up, I can nail them out. I just lack the self confidence. It’s kind of like when I was learning ASL and going to the functions. If you make an effort, they (the foreign language person) will be thrilled! Just difficult to find Italians to practice. Plus I don’t drive so that kills it there. I know there is Skype and other resources but I’m skeptical on people (especially after all those ‘learning language’ sites). I’m not where I would like to be but I’ll get there.
The dogs and birds are still with us. Jacob is 9 and Zeke is 6. I can see the gray in their faces but they still have their active moments. I’m feeding Jake pumpkin for his digestive issues. He wasn’t having good BMs so the vet suggested regular pumpkin. I didn’t think he would go for it but he does like it. I do that every other day. The birds, Sammy (I think about 7 years old) and Cino (about 1) are still around. I did have a female but she got out. The boys are not as active since she has been gone. I think after the holidays are done, I may get another female. It’s nice to see them fly around the room and interacting. But man are they loud!
I have been off of prednisone for almost a year (March 2018, last used) and have been getting infusions of Benlysta. Somehow I got a hole in my left eardrum. It did get infected, saw the ENT, cleared that up. I really don’t want to do any patch up work especially since the infection is gone and I haven’t had any problem with it. I do see the specialist in February and she will make a recommendation about surgery. I told my rheummy about it and she told me if it isn’t bothering you, it really isn’t worth it. But she told me to see what the specialist has to say. But no skin rash anywhere for a year and hoping it continues!
Here’s to hoping 2019 is better for my friends. Janice and Kelli both lost their fathers this year. It’s a blow to any girl at any age. Dads are supposed to be immortal.
I think I caught up! Next time will be in 2019! WOW! Have a Merry Christmas and a Happy New Year!
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.
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.