Category: Lupus

Fear of Others Forgetting, Leaving, Criticizing.

Posted on by F.Magdalene

To most I don’t look nearly as unhealthy as I am. Will people move on and expect me to keep up bc they think I look like I can? Will people remember how bad it was physically and emotionally and have grace for me when I get messed up during anniversary times like May 7th?

I don’t think people get that just because it was 2018 that the raw fear hasn’t passed. I know my amputation is limited but it’s on top of everything else. The nerve damage is crazy. The nub is open again. Open but not infected. I’m requesting medical honey for it.

Without THC I hurt all day, every day. I’m trying to get used to being high in public.

I have nerve damage from the full mouth tooth extraction. It’s so painful I rock back and forth holding my mouth. It’s been what, 4 months since the dental surgery? Just like phantom pain in my foot, I have dental phantom pain.

I fear people will expect me to keep up in life. I don’t think I can. If I fall behind (or become mentally unwell) don’t want people to forget why then give up on me.

I’m not a slacker.

When I go to the store like today people ask why I’m in an electric chair. Old women find it OK to comment on how they see so many young people in the electric carts. They ask, what’s wrong with you that you need a cart? It’s not diabetes. It’s Lupus! Yes, different stages of Lupus can lead to kidney and vascular problems. Blood clots lead to amputation.

Days like today fluster me. I was flat out asked what’s wrong with me. I sit bc I have to. Life in a wheelchair is harder than walking. It hurts. I get pressure sores from sitting in the wheelchair. The muscles in the lower back begin to shorten and spasm. Carpal tunnel is a struggle. Life long constipation, etc, etc. Life in a wheelchair isn’t as healthy as walking.

Update – I have an active blood clot in my left hip. The right leg shows vascular issues. I’m not in jeopardy of losing it.

So, I guess it boils down to understanding. I want my friends to understand why I’m not ok sometimes. I don’t want to lose my help bc I appear healthy.

Lastly, I’d been saying I can’t survive anything else, especially an amputation, but I was wrong. I have a lot of fight left. It comes in waves. Sometimes my strength has to be mined like gold, but the payoff justifies the effort.

Joan

Divided

Posted on by F.Magdalene

Content – Dissociative Identity Disorder, Uncontrolled weight gain, CNA in public.

Dr. D hasn’t changed my diagnosis. He still recognizes the disorder. He wanted to know if I believe that ‘they’ are all me and not actually separate. I said, I know it’s impossible to have more than one person in my head, but I want you to understand that I’ve been doing the impossible for a very long time.

I told him that I used to think I wanted to be one person but now I’m not sure I could stand the silence. I get this image in my head of a single person standing in the middle of a black tunnel, alone. That’s how I view being one person. In the middle of a dark tunnel with very little air and a whole lot of silence.

While I’d love to have less noise in my head, I decidedly do not want to be just one person. I don’t want any new people either.

I shared with him that I felt very threatened by his questions and pressured by my insiders to speak up for them. They would have felt betrayed had I not stated that we’ve been doing the impossible for a long time, and they’re here.

I talked to him about how panicked I’ve been lately.

I’m having a hard time settling down enough to post art for sale in my shop. I’ve got six items but I can’t seem to get over there and post more. I don’t know why. So, I’m just letting myself paint as much as I need then when I’m able I’ll post more art for sale in my Etsy shop.

Me = I caught a glimpse of myself in the mirror today. I swear, pounds just pack on me no matter what I do. I feel so ugly.

I was supposed to go to the mall to roll around in my manual wheelchair but I’m afraid to go to the mall. I don’t want to get shot.

Could I somehow, some way get doctor’s clearance to go to Planet Fitness? Could I have CNA coverage and transportation? Am I a fool for even thinking it?

CNA = My psychopath CNA is going to get us killed with her rage, laying on the horn yelling at people. I don’t want to continue to intervene as if somehow I’m here social worker or therapist. I have to let her know that if her actions cause the police to be called, she can’t work for me any longer. I’m going to have to tell her that it’s not a joke, if someone calls the police bc you threw something or threatened someone, you don’t work here anymore.

I had a really nice Saturday person that cared for me. I hope she can return.

Why do I hate myself for having care? I don’t think everyone inside agrees with that statement.

Faith

At War With Myself – Disordered Eating

Posted on by F.Magdalene

Content – Disordered eating. Binge eating, no purge. Shame. Hopeless feelings. Anxiety. Inpatient for medication management.

I had therapy today where it was decided that I’ll have a short set time with extra home care. I’ll be adding a 3 hr day to Saturday until the beginning of the year.

I really have a hard time keeping myself together. I’m close to needing inpatient. I’m trying to get around that.

I burst into tears 3 times Friday, out of nowhere. Thursday I was so anxious that I felt like I needed complete quiet bc I was so overly stimulated. Every sound assaulted me. I couldn’t sleep until around 6am. My head has been all over the place.

On the 8th I’ll go to see how my eyesight is doing with the Pseudotumor cerebri. Peripheral vision is gone on the left side. There’s a large blind spot in the middle of the left eye. I have some issues on the right, mostly fatigue, I think. Def worries me.

I was supposed to lose weight so I can avoid a spinal tap. Instead of of being thinner for my opthalmology appointment, I’ll return 30 lbs heavier. How will I explain that? I have to take the psych meds and I have disordered eating. It’s not going well. I know my eating is disordered, maybe even addiction level. I have the pull of increased appetite from those 2 meds and then my disordered eating.

The difficulty is that I can eat and eat without feeling anything. I’m not satisfied nor am I hungry. I’m empty. As cliche as it sounds, I keep trying to fill a hole. So I keep eating, mostly sweets. Binge eating is a problem. The other day I ate six apple fritters in less than 30 minutes. The day before I had twelve strawberry pop tarts in about an hour. No other food those days bc I didn’t remember.

Eating to sooth emotions is a problem. Baked goods make me feel better. Coffee and tea make me feel better. It’s like I’ve got to put something inside myself, only once it’s been eaten the soothing is gone. 1) I can’t tell that I ate or drank. 2) I’m back to whatever I was feeling that caused me to turn to food. It’s a vicious cycle.

After the 12th all my teeth will be pulled. I’ll wait for them to heal before getting full dentures. Eating will be difficult. Having disordered eating at that time worries me.

Now that I have a steady CNA and now that Dr D works in a building that is handicapped accessible, I can go see him. I’m just embarrassed! I’m embarrassed about seeing the ophthalmologist this coming Friday. I’m embarrassed to see my primary doctor. I’m embarrassed to see my psychologist.

I thought to myself the other day, there’s very little understanding offered to people who are overweight. At least some understanding is offered to people addicted to street drugs. Fat people are blamed and mocked as if the reasons for my addiction are any different. Life hurts. Same story, different poison.

I feel lost with my eating issues. I keep thinking I’ll get a hold of it. Add disordered eating to the pull of medication side effects from seroquel or my Pregabline and I’ve got myself an inner war I’m quickly losing.

Joan

This week in photos: Stress. Pets. Art.

Posted on by F.Magdalene

Joe has finally won over the CNA. She likes him quite a bit. Joe doesn’t climb in the chair she usually sits in but he does rest under it now.

I’ve been doing more art with Scriptures and scriptural thoughts. This little 8×5-ish painting is for a good friend of mine in Arizona.

I’ve got to work on spacing out my lettering better.

Rosie is taking a bath in the 30 gallon, over grown, terrarium. Today on a group there was a free gecko. It took everything I had not to inquire. 🙂

I think as my buddy gets older I fear losing him.

I thought getting a younger cat now might make the inevitable, tolerable. But then there’s the possibility it’ll just stress Joe.

Joe is only 14 but that’s nothing to sneeze at …….. He’s been letting me pick him up and hold him a little longer, which is great for me. If I talk to him he’ll let me hold him longer but I find it difficult to chatter at pets.

I’m in love with my raw beads! I used brown Sculpy mixed with yellow FIMO that dries like leather. Just to put them in a safe spot, I slid them on a piece of leather. It looks pretty good. I put it on my vase holding my arrowhead plants.

Painting rocks and making beads is so relaxing.

Here are a few photos of me on ‘outing day’. Next week I’m going to CC’s Pizza. I’m getting out a lot more and loving it.

I’ve got company this weekend. It should be nice. Lol I feel like a bit of a social butterfly again.

Until soon,

Faith

Put Up or Shut Up

Posted on by F.Magdalene

Content – Domestic Violence, sexual abuse, negative family response to child abuse, emotional, CNAs

You know how you listen to a person complain but they fail to change what they’re complaining about? You try to be supportive but you just end up frustrated because the person will not make a change. I’m doing something like that right now.

I needed to make a decision, then I needed to act on it, so I did. I didn’t make the decision based off of what others might do but off my experiences. So, for now, I’m keeping the psychopath CNA that I have because in addition to her psychopathy, she shows up to work every day, on time and without those ridiculously long eyelashes and fingernails. This 65 year old woman doesn’t change her hair every 3 days which means I recognize her when she arrives.

When my CNA shows up she’s not drunk and her car has insurance and doesn’t smell like weed. She’s clean. She takes me to the store, on and on. She’s not obese. Why do they send obese CNAs to help an obese patient living in a tiny apartment? Make it make sense, boo. So yeah, I’m keeping her and her psychopathic tendencies until further notice. I intend to complain about her behavior. You don’t have to listen if you don’t want to.

Dr D asked if I was being abused. I told him I’m not sure I’d admit it if I was. I wonder if I’d respond like a battered wife, again. I know I would, which is why openly discussing issues with her to my therapist will be important.

I think I’d be embarrassed to say I’m being abused. The fear is that I won’t be believed or that I’m being too sensitive. I worry I’ll then be labeled as someone who has to be watched or I’ll make accusations. Let me explain.

After time in Florida with my now deceased uncle and my mother’s sister, I returned to Indiana on an emergency flight. In Florida I was going to be left home alone with an abuser, the uncle, for a full weekend. Very long story short, when I got back to Indiana I wasn’t allowed to be alone with my grandfather anymore. One aunt said she didn’t want me to have the chance to make accusations against him. I felt marked and like everyone would be on guard around me for fear I’d strike with a terrible accusation. I couldn’t be around any males alone anymore out of concern for them. I worry about the same kind of thing happening now.

I need help sifting through the drama and mayhem that happens here sometimes. I need help sorting through my emotions concerning treatment by any given individual. Why? Because my eyesight has been altered by child abuse and abuse in romantic relationships. I don’t see as clearly as I need to which is why I will benefit from bouncing things off my therapist concerning CNAs.

A second pair of eyes will be helpful especially when that person understands I’m not as emotionally strong as I come off. I don’t look like I could be abused and say nothing. I sometimes feel just like that little girl in the old photos on my wall. I’m not though.

I think it’s sad that I need to accept a certain level of drama and mistreatment as normal CNA behavior. I’m not a person that just anyone can work with. My mental health often clashes with the CNAs mental health. We are both guilty of impatience, preconceived ideas and plain ol being tired of people. Putting these CNAs in with us is like putting the odd couple together. It either works or someone is flipping out. It’s so stressful.

When she comes in I look at her to see what mood she might be in. Yeah, there are serious issues here but so far things remain under control as far as abuse goes.

This battle with caregivers will not end for me. I’ll have caregivers for the rest of my life. I’m learning how to deal with them and I’m learning how to be strong enough to speak up for myself when it comes to abuse.

If a person wants to argue, I can argue with the best of them, then tell everyone what happened. But if I’m struck, intimidated or threatened, chances are I’d say nothing. That. must. change.

Joan

Freedom. Up Hill Battle.

Posted on by F.Magdalene

I paid a heavy price in pain for a little bit of freedom from my wheelchair. I decided to walk about 100 feet up a ramp to my apartment. I needed to stand up at my normal 5 foot 3, and see the world from the angle I was accustom to.

The problem with walking outside is that I can’t feel the ground under me. With shoes on, I can’t feel the ground. It takes a lot of concentration. But today I needed freedom. I swear I feel like a caged animal willing to pay a high price to have someone open my cage and let me out.

The price I paid for about 100 feet is extreme pain in both hips. Both hips have avascular necrosis. I’m having terrible spasms. All of this just to stand up and walk for a little bit.

Was it worth the cost? Yes, for a few moments, walking in the sun, yeah it was worth this.

I’m in bed right now willing a slice of pizza hut over here. Lol It’s in the kitchen. Lol. But I’m writhing in pain. My legs hurt so badly, they’re squirming all over the bed down there. The pain is from the ankle up to the knee then both hips. I really want that pizza though lol.

My little walk reminds me very much of my little painting called Up Hill Battle. I guess sometimes the hill seems small to others but that doesn’t mean it’s not a battle for the person trying to climb it. We never know how much baggage a person is carrying, mental or physical pain. Even the slightest incline can be a struggle when the person walking is carrying a heavy load.

The miniature is complete. I gave it a nice seal yesterday. My intent is to have it in my shop this evening. If you don’t have an Etsy shop but there’s interest, you can send me an email. I accept PayPal. All contact info is on the sidebar.

I’ve been craving pizza for days. I really want that pizza in the kitchen but the price is a little high for me to get up and get it. I’ll use patience. I’ll rest then have pizza later.

It was still a nice day. I love outing day 🙂 Please let this CNA stay. I adore her.

Faith

Bad Things Happen to Good People

Posted on by F.Magdalene

It’s sobering to think that no matter what we do or don’t do, bad things happen, sometimes in rapid succession.

There’s an historic example of a man who lost loved ones, employees, finances and his health in no time flat. When I think about his life before disasters struck, I can see he did everything right, then blam! When reading that account there’s something I noticed, something I missed about it 5 years ago. He asked a lot of questions to help him understand his situation.

This poor guy got a lot of flack from people who should have supported him but didn’t. True help came from an unexpected sourse. But what gives me pause is how the gentleman handled himself during the entire nightmare. He listened more than he spoke. That’s significant for me right now.

I have so much going on with my health that I wonder how much one body and one mind is supposed to take? I’m not alone in piling up devastations.

I’m shocked and horrified by what my friend from the hospital in 2018 has gone through. It’s not bad enough she has Lupus, was on life support, had a stroke, had to relearn everything from being paralyzed to the point she was only able to move her pinky finger. Do you know the fight it takes to come back from that?

She spent significant time in a nursing home which is where we met. After she left and hoped to move forward, she had cancer and needed a double mastectomy! All without the support of her parents, for whom she openly grieves. Really?! Can our girl please have a break, too?

I think I understand even better why it’s best to take life one day at a time. I make arrangements then do day to day battle towards the fulfillment of the arrangements / goals. A day at a time is hard enough. I’m not about to double up on troubles.

As it stands, I’m going to need 2 hip replacements due to avascular-necrosis (AVN), the left is first. I can hardly sleep bc the pain has been high. Sitting can be difficult.

I’m discouraged if not fearful. I don’t want to have a knee jerk reaction to anything but I do want to prepare. I’m so grateful for having a good CNA. Please let her stay!

I’m working to downsize my responsibilities. In addition to selling 5 of my largest plants, I’m going to need to downsize pets before a yet to be scheduled total hip replacement on the left followed by an eventual total hip replacement on the right.

I’m going to rehome my two Madagascar Tomato Frogs as one complete unit. They come with their bioactive terrarium. I placed them on Marketplace and listed the various plant types, hard wood, hides, lights, screen and locks. These were purchased from Josh’s Frogs as early juveniles. They remain healthy at age two.

I hate to see the Tomato Frogs go. There’s no way on earth the 100g White’s Tree Frog terrarium is going anywhere. Don’t even ask lol The only pets being offered are the Tomato Frogs. Everyone else is staying. We already know Joe Schmoe’s place is secure.

Emotionally I feel hopeful about this. I fear having hope that maybe…. maybe with new hips I might walk again. I’m afraid to put my energy into what seems impossible.

As I was writing this, it occurred to me, I shouldn’t feel stupid just because something I hoped for didn’t turn out. For some reason I thought, if I openly hope to walk again but it doesn’t happen, I may feel foolish. And I will have made others hope without pay off for their support. This is wrong. Who wouldn’t hope to walk again? Who? And what friend witholds support because their personal pay off isn’t high enough?

I fear disappointing people. If I don’t walk will I have wasted their time? l honestly feel ashamed that I’m getting ready to put my friends through yet another ordeal. The hip replacement isn’t the ordeal, it’s my blood disorder related to Lupus that has me so worried.

My hope is to listen to the support of my friends without countering it with fear of disappointing them.

I intend to speak less and hear more. I don’t mean silence. I mean that my personal expressions and opinions don’t have to be shared in full, at all times. In my private life, I need to allow others to express themselves more.

There’s a time to speak and a time to listen. If I’m talking to a friend, I’ll hear more and speak less. In a group of people I don’t know well, listen more, speak less. Perhaps by not dominating the conversation I’ll hear the tid bit I need that changes the day from burdensome to manageable.

Faith

Remnants. Art. Seeing.

Posted on by F.Magdalene
Behind the curtain. Behind the light.

I’m getting ready to start physical therapy here at home to help some of the healing along due to recent falls. I’m pleased it’s at home. I told the doctor I’m not able to tolerate going to a center for physical therapy because of the setup. There’s too much public activity, noise, movement and touch, for me to be able to think straight and not panic.

The painting shown is still being worked on. It’s one of my collages, which I have found myself drawn to lately. I’ve got many pieces of this and that saved art piece that on their own doesn’t work but added to other cut outs, makes a great piece of art.

This is very indicative of how I’ve been feeling. In my head, I see myself as fractured and torn, both physically and mentally. It feels good to take the remnants of my art pieces (pieces of me) and make something good come out of the broken pieces. It’s similar to what the Japanese do when putting pieces of a broken bowl back together with gold. My goal is to improve self esteem. I also enjoy it.

General updates

  • Soon iI’ll know a decision from my insurance about a new Jazzy Pride electric wheelchair.
  • Joe just turned 14. It makes me a little nervous. His only issue is from the stroke. He doesn’t see as well.
  • Joe is still very much a service cat. He still alerts me to my blood pressure dropping too low.
  • I learned to make sour cream from my homemade yogurt. I’m growing my own ginger and turmeric inside. This growing season I’ll do spinach and salad greens with grow lights. The point of all this homemade stuff is to shave some off my grocery bill.
  • My OCD has been raging but I’ve been able to challenge it. Things go terribly if my thinking is too disordered and I’m overly stimulated. When that happens I have to go on an apology tour.
  • Dissociation and switching has occurred regularly, including switching while my nurse and CNA are here.
  • I’ve been able to paint as before with no real issues. There’s one painting in my Etsy shop.

Another physical change has taken place that affects my art. I can’t see! Dang it! I have to wear glasses to read or see anything in front of me, including my dinner plate. I can see far away, though. I need to see the eye doctor soon for prescription glasses. For now I’ve got bifocals from Amazon. I like them. Life is easier all around with bifocals.

Interesting is that it feels weird painting through glasses. It feels like I now have a physical barrier between me and what I’m creating. It feels like I’ve got my hands through the holes of a glass panel trying to paint or sew on the other side of the window.

Another new tool at home is this comfy Kaftan. I’m obsessed! I also like that I found an Etsy taylor with prettier dresses for the same price. I’m looking to get two more by this summer.

Kaftan’s are user friendly for disabled people with incontinence. I have spastic bladder as a result of the Thrombectomy surgery, which means I have to change depends several times a day. The last thing I want is to take my pants off several times a day because I need to change depends.

These dresses are fun and they are sooo me! I think I’m loving my Oprah glasses and Kaftans. I have one pink, white and green tie dye and one blue, gray, black and white tie dye. Totally me.

Faith / Joan

Finger painting

Posted on by F.Magdalene

I broke both wrists and strained my right shoulder. Yeah. Not good. It’ll be interesting to see how the next 8 weeks play out. That’s how long before the shoulder and wrists start to feel better.

I still need to be able to paint so I’ll be doing pinkie paintings. 🙂 I’ll have to try to cover all cast and wraps. Thank goodness for press and seal.

I’m definitely not ok with this situation but I’m relieved I can accommodate my need to create.

Also, I’m still working on getting an electric wheelchair bc rolling myself around isn’t working right now.

Faith

My Goals are Still in Sight

Posted on by F.Magdalene
New big ol glasses

I’m still rolling. 🙂

What an exciting few weeks. I went from mourning my old CNA to getting a new one with whom I am very well matched. Having her means I can let her do some things and leave other things to me. I can keep up with my letter writing and other forms of reaching out to people. And I can keep up with my artwork.

My goal was to re-open my Etsy shop but I’m not ready for that. I can paint and sew but right now I need to wait a little while longer. I’m ready to do the art, I’m not ready for the stress of opening up the shop and getting stuff out on time. The goal is to do so but at this time there is no tentative date.

I’m pleased that rumination has decreased, which makes thinking much easier. The depression is better under control, and my physical health is holding steady. Concentration is crap. It’s awful but at least I’m completing things even as I bounce from project to project. I have zero concentration any more.

Anxiety is wicked. I’ve changed up how I do my Delta-8 so that it will help with anxiety more and kick in sooner. Sadly there isn’t any guidance on this. It’s trial and error, but at least it’s still federally legal and the cost is still within my means.

THC brownie bites

I baked refrigerator dough cookies and brownies. I cut them into dose sizes then dripped liquid THC over the top of the goodies. Works like a charm. It can be done with THC butter, too.

THC cookie bites

My metabolism is deathly slow which is why it takes 2 hrs for a bite size edible to kick in. It lasts up to 5 hours though.

Pain is not my friend. Anxiety isn’t either, but the depression and physical pain is significantly less, which has raised my quality of life. I’m still a bit reactive but not even close to how I was. Eating is a chore but that is getting better, too.

Wow. Food prices! No matter how much food costs increase, my budget for food has not. It’s been stuck at $200 a month for a while now with no sign of change any time soon. I’m blown away by food prices. I’ve been trying to see where I can clip pennies but I’m not sure where anymore. Perhaps it’s not totally a bad thing that I have zero appetite. Amazon Fresh is so high right now that it’s straight up robbery!

Menopause – well, I haven’t gone to jail yet. A terrible hot flash at least once an hour. Decreased ability to handle stress. I click on people! An Amazon employee had me so frustrated that I asked to speak with someone else. She said, who? “I said, I don’t care, anyone but you.” I really wish I didn’t say that to her.

So, things are progressing in a manner I couldn’t see 6 months ago. I want to remember that even in the worst circumstances, everything changes. And since I am involved and invested in life, chances for positive change is strong.

I’m happy I lived long enough to truly believe and trust that things change. Youth doesn’t provide enough life experience to fully grasp that things change for the better and you can move past what feels impossible. I wish my brother could have understood that.

Writing another page of life

Faith – Morton’s Pride