Alone with Chronic Pain

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It has been a while since I’ve posted (other than Walk for a Dog) something on WordPress. I haven’t even been able to read my follower’s posts. It makes me feel a little sad because I usually get such joy out of writing and I may not have internet access soon.

My boyfriend and I had broken off things a few months ago and our lease expires at the end of August. My name finally came up for housing so I will be living in a housing unit. I’m not really excited to live on housing and to deal with all the paperwork but it will feel good to have my own place. I actually have a place in mind that I would love to live in but am not going to say anything on this post in case I jinx myself. 🙂 So, to be continued…

Yesterday was a bad day for me. I didn’t feel like myself, I couldn’t get comfortable, and I was in pain. Not only was I dealing with my chronic pain but I was also completely alone. Some days I can handle it, some days I can’t. As I was laying in bed listening to the thunderstorm, these thoughts popped into my head. I knew I had to write them down otherwise I would keep thinking about them. I was too tired to write so I did a voice recording. This is what I had said:

Your family members are in chronic pain as well so they can’t help. You don’t have any close friends that you feel you can count on to ask for the help. Everyone has their own lives and are busy, they can’t sit and take care of you. At times like this, it’s where you are alone and you just want someone to be there. Your one close sibling has 5 kids so you don’t want to ask her for help. You’re living with your ex-boyfriend and I’m not going to go there on that subject (because I no longer try to write about my relationship woes on WordPress, as much as I want to at times…).

You just want someone to sit with you, even if they can’t help in any medical way. Just having them sitting there helps. I have Storm as my companion dog but sometimes you want a person that cares about you. Some people may say, “Well just give me a call and we can chat.” No, I don’t want to talk on the phone, I was someone physically here.

They have an organization here that can send someone to your place to help with your disabilities. I called them Friday and found out their services are only limited to people on Medicaid, which I am not able to receive. Apparently sometimes they can offer the services for a fee, but for someone on my income it would cost $400 a month. I asked if they take in consideration what I pay a month for rent and they said no. What the fuck?!? I told them I was moving into housing, that I was not just blowing my money left and right, or that I had money to blow.

“Well, there’s a lady that does some financing and she might be able to help…” That’s when I stopped listening. So, I guess we will see how it goes once the time comes…

*Thank you to http://www.davidbain.org for use of photo.

A new Lupus symptom for me

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Upon waking on Sunday, February 1st, I looked at the bathroom mirror and groaned. Pink eye. Awesome. The weather was super crappy and I was trying to decide if I wanted to go into acute care. I figured it could wait another day but texted my mom to let her know that I would be needing a ride some time on Monday. She mentioned she had the grandkids so it would be easier if we went on this crappy weather day. So I gave in and she told me she would be on her way to pick me up.

Once I saw that she was at my place, I quickly went to her vehicle and opened the door.

“Here,” mom said while thrusting black gloves in my face. “I am NOT getting sick and I don’t want your germs.” I looked at her. Her eyes went wide and she said, “I’m serious!” So I pulled the gloves on and we took off.

Once inside the acute center, the doctor checked out my left eye. She sat down to log onto the computer and spent a couple minutes scrolling. She sat up and informed me that she would be right back. I sat there confused while waiting for her to return. Why didn’t she just say that I had pink eye?

After a few minutes she came in with a piece of paper, which she gives me, then sits down.

“It’s not pink eye,” she stated. Then she began to tell me that sometimes with Lupus patients, they get what is called Episcleritis. This is inflammation of the whites of the eyes. She mentioned I have to make sure it doesn’t get worse and have it checked out by an eye doctor. She gave me a prescription, but it was basically like a high dose of Aleve.

A couple days later I went to my eye doctor and she explained what it was (same answer as acute doctor). She wanted to give me some eye drops since that is what we were trying to treat, it only makes sense. She prescribed a very small bottle of Tobramycin and Dexamethasone Ophthalmic Suspension (I’m just listing what the box read) and I was to place one drop four times a day for five days. It worked just fine.

I noticed a couple of things before I had to go in but didn’t pay much attention to them. My eyes seemed to have more gook than normal when waking up and during the day. My eyes were painful but I figured my allergies were just starting up. But now I know, and knowing is half the battle (Yes, that is a G.I. Joe reference).

Crabby

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I am currently lying in bed and ready to turn my light off but I keep putting it off. I wanted to do a blog post earlier but that didn’t work out. My body is sore and tired but I can’t seem to quiet the mind. And it’s been like this ALL day.

There are days where I wake up and am just depressed. And I know the next day will be better but getting through the current day is horrible. I sit and wish my life away…

I tried different things or skills that I learn in therapy, but nothing seemed to work. Chocolate ice cream – nope. Reading (which is my favorite hobby & can normally quiet my brain) – nope. It seemed even for the things I loved, I seemed to no longer love. I didn’t even want to see any person I care about. I felt like I just didn’t give a shit. I thought about calling my therapist but I pictured myself listening to her while rolling my eyes. I saved myself the hassle and decided it was not a good idea.

Does anyone else get like this? Nothing has gone wrong but you wake up hating the world for just that one day. I don’t know where it comes from; if it has something to do with my Lupus (a sign that a flare is on the way), or if it has something to do with some mental issues that I am dealing with. I do deal with depression but it felt worse than that.

I decided to take a nap and I woke up feeling MUCH better! Mind you, I am still crabby but I am no longer on the downward spiral. So when all else fails, take a nap. 🙂

I’m still around

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Last time I posted to this blog was about two months ago. Even then, it was a repost and not something I actually took the time to write. Lately I have been putting most of my energy into my other blog (WordPress — paws2smile). I guess I don’t have much going on with my Lupus that I need to write about, which is a good thing. I think it also has to deal with my profile/Gravatar picture. Sometimes it shows, sometimes it won’t. I have tried researching it and end up getting frustrated. Because of that, I feel negative every time I log on and hiss at my computer when I see the generic picture of a person that is supposed to be me.

My health hasn’t been that bad, which I am thankful for. I had an appointment with my pain doctor about a month ago and gave the update that I was doing well and sure as shit, the next week I got headaches, which turned into migraines and a flare. I am still dealing with the migraines and not getting much done of anything. House chores, blogging, article writing… it is amazing how a “bad headache” leaves you useless. I spent the hardest week in bed, sleeping my days away. Sleeping was the only time I wasn’t in pain and was the only thing I could do. With nausea, light and sound sensitivity and dizziness, it is hard to even watch TV. But it has gotten a little better.

Friday and Saturday I felt pretty good so of course I did house chores and overdid myself. I was just feeling so GOOD that I didn’t want to stop and take time to rest, I thought my flare was over. And only certain people will understand this, but it felt GREAT to be able to do chores. I was so happy to be doing laundry and the dishes. There is no sarcasm in this. Friday I had some pain but went to doggy daycare regardless because it has been 3 weeks since I was there last. I missed my pups. So we will see how much longer this flare lasts.

My dad and stepmother have been on the Paleo diet for some time now and now my dad wants me to start. He has heard stories of how much the diet has helped Lupus patients. I’m on the fence about it since it’s a diet that requires a lot of meat/protein and no bread/carbs. I’m not much of a meat-eater and I LOVE bread. He is on my ass about it but I really can’t get mad at the guy because he cares and just wants me to feel better. So, I suppose I should start reading some information about it. I honestly do need to change my diet though; my body is reminding me that I am getting older and I can’t enjoy the sugary foods as much as I used to.

I have decided to start using/selling oils. I am impressed with them! I have just started so I don’t know much, other than they work. For now I only have two bottles to work with, Thieves and Peppermint. I have Lavender on the way which is exciting because my boyfriend and I have been using it in the diffuser every night before bed. It’s so relaxing, I can’t believe I didn’t start doing this sooner. And I am finding my boyfriend likes them just as much as I do, which may help me to keep spending the money on them. 😉

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New therapist and therapy

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I’m sure you know as you read from my last post that I am still seeing a therapist. However I have changed who I see. I liked my first one, she was such a sweet, old(ish) lady and I actually felt like I was learning something and was on the path to a better me.

Of course we all know how much insurance is a bitch. I was getting onto Medicare and her company will not allow Medicare so I was on the search for someone new. I mentioned to my pain specialist if he knew of another good therapist that I could go to and that would take Medicare. He gave me another name so I went to visit her.

At first I wasn’t sure if I liked her; she seemed wayyyyy too happy. But not long after meeting her she told me that she is also a child therapist, which now makes sense why she is so upbeat. I have seen her a few times now and I have to say, she has grown on me! She is always trying to make me strive to be the best that I can be, and that’s great! I guess my first therapist that didn’t bother much with me had left a bad taste in my mouth and now I am leery of who will be trying to figure out what’s going on in my head.

I see her once or every other week while I also have group therapy with her and others. This group therapy is called Dialectical Behavior Therapy (DBT). This therapy teaches a person to manage their emotions, stress, etc. It has four focus parts: “Emotion Regulation, Distress Tolerance, Interpersonal Effectiveness, Mindfulness.” I haven’t been able to do my first group session yet due to bad weather and sickness. Which is fine by me because I am nervous about the whole “group” thing. I do not like being the center of attention as well as being in a group and getting picked to answer a question. However, my therapist PROMISES me that I don’t have to talk if I don’t want to. I’m holding her to it.

The little nerd inside of me gets excited because we have weekly ‘homework.’ Surprisingly so far it has been a little difficult. I don’t know if I took shitty notes or if it is because I haven’t been working on this very long yet. We have to valuate our day and see if we participated in the four modules. Maybe it will be easier once I have my first group session and have heard other participant’s answers.

Has anyone tried this DBT form of therapy before??

 

 

Photo credit: www.mediabistro.com

Another Fun Filled Lupus Day

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This was originally written on 7/24/11

Yesterday was another day of battling my Lupus flare. It was somewhat manageable in the morning as I helped clean my sister’s place. I was doing ok but not after too long, the fatigue and pain had let me know they were here to stay for the day. Soon, each individual step was hard to take. I plopped down on the couch and let my head fall back. I have completely no energy. Even the easiest task of keeping my head up was exhausting. I mentally debated if I should go to my friend’s wedding reception that night. This would be my third wedding missed in a row due to my Lupus.

I wish for a cloudy, stormy day. This heat and sun only make me feel worse. Which is ironic because it is usually opposite for everyone else.

Storm looks at me with her big, brown, puppy-dog eyes, asking if I will play just one more time. But she already knows the answer. I get on the floor to lay down, curling up next to her and try to take a nap. It’s funny how as child, that is the last thing you want to do but once you’re an adult, you want to take them all the time. Well, it’s that way for me anyway. The nap is a failure and I become agitated.

I called my mom to vent and began to cry (while making a mental note to see my therapist next week). I cant decide if I should put myself through the extra pain and exhaustion for the reception. I feel guilty and feel like a bad friend.

“I’m sure they understand,” she stated. Which made me think, ‘But do they really?’

She helps me see past some of the denial and I now see (and know) that I should stay home and take care of myself.

I start wondering what I will have for supper. The only thing I am craving is a turkey sub from Mr. Goodcents but I have no idea how I will get one. My small meal isn’t worth having them deliver it to me. I start to ponder if I could ask Mel to go or if she would even go for me. I throw that idea out the window and begin to start talking to myself, pointing out that the trip would only take a couple of minutes.

Motivating myself does not work which means cooking something is clear out of the picture. I realize I need to figure something out since I never had any lunch. So, I open a can of fruit cocktail and wait for tomorrow to enjoy a meal.

I haven’t lost all hope that I have to miss the reception and try to nap a second time. And I finally fell asleep! I still have my symptoms but they seem to be giving me a break. Erik comes to pick me up and we go to the reception, or so I thought.

We arrive at the Japanese Gardens and listen to its’ silence. We expected to hear music, people talking, and laughter so we figure it must be further into the garden. We walked all around and didn’t find anyone. I texted the groom where the reception was but didn’t think he would reply. But I tried just incase. Erik brings me back to my temporary home, at my sister’s, and we spend the rest of the night listening to Erik tell high school stories.

When getting ready for bed after Erik left, I noticed a text from the groom. By this time I knew there was no possible way to make it while trying to stay awake and driving at the same time (sorry Shane!!).

I have to learn to stop trying to please everyone and take care of myself first. I need to realize on my bad days, not to keep pushing myself and stop being such an overachiever.

Sometimes in the back of my head I wonder if I have “fully” accepted my Lupus, or just think I have…