Posted by: hockeygrl1 | February 8, 2011

Taking my health seriously #HAWMC Day 25

Red pen day: Find an old post of yours from months or years ago – revise it as radically as you can (use Track Changes in Word or red font in your blog). What changes did you make? What clarifications did you need? Publish the new version. Post both versions if you’re brave.

*** This is the first blog about my health I wrote. It caused friction between my siblings and I that will never be fixed. They cannot understand my condition and I cannot understand their ignorance. They really think I still can do it all and should be working a full-time job. It’s really sad to lose them over my illness just like I’ve lost my ability to work and function at 100%. I made some changes. They are mainly to not rip on my brother so much and to hide his weakness. My sister said that the earlier post bashed my mom and dad, but I never saw it that way and still don’t. I revised some of that too and even put one statement in bold print to emphasize how bad I feel. So enjoy the new version.*** 

stressI thought I was going to introduce you to my whole first year of being ill, but Super Bowl Sunday changed that. A few things that are happening in my life are not healthy for me, but I feel as if I have no control over them. But we still need to start back in time.

After living with lupus for 2 and a half years, I decided I needed more help. I couldn’t take care of myself, the kids, the animals and the house. I had a small amount of spoons and I just couldn’t do it all anymore. Between dishes, laundry, cooking and taking care of the kids dog and yard, I was doing more harm than good. My health was suffering. To help, the kids and I (and 1 dog and 3 cats) moved in with my mom and dad (and their 3 cats).

My parents are retirement age; mom is already retired and dad was going to retire in a year. I didn’t want to hurt the financially so I volunteered to help pay for part of the renovations need for us to move in. I bought a toilet, sink, lighting fixtures and paneling for the bathroom. I bought paint and sheet rock to build another wall so I could have a bedroom. I also bought a kitchen sink and fixtures for the sinks and shower. This all come to over $2000 spent, in fact I think it was more like $3000 that I gave mom and dad before I even moved in. 

I’m not trying to be bitchy, it’s just that my siblings seem to think that I am using mom and dad. I don’t understand why they don’t get how sick I really am; maybe it’s the whole “but you don’t look sick” thing. If they could just feel how I did for a few days, they’d get it.

I also volunteered to pay rent. The decision I made was $500 a month and mom agreed. I also buy some groceries and all my milk and breakfast things for the kids. I eat lunch here (they kids have school lunch). The only real big money meal all 3 of us eat is dinner. The reason we have to eat with mom and dad is because my kitchen is not finished. Once it is, we will be on our own for groceries and meals.

The agreement was that before we moved in, I would pay money to help with renovations to the basement and once I moved in I would pay $500 in rent. We started renovations in January. So I started to pay the $500 per month then. We had to add a wall so I’d have a bed room and we added a bathroom downstairs and I do have a kitchen sink. We are still waiting for the rest of our kitchen to be built. (this is a major stress point for me right now)

OK, now jump a head to December, my little brother calls mom and dad and tells them about all his problems. You see, him and his girl friend and their baby moved to MI in June. They are living in a mother-in-law apartment attached to the girl friends dads house. Jason and Karley have jobs, but I guess they weren’t making a lot of money. (I’m really unclear on this. Jason did get a settlement of $30,000 before they moved out there because of a work injury to his back. This is his second settlement because of a work injury.) In August, the well went dry so they have no running water and the furnace is broken so the have no heat. That’s a problem with a baby and living in upper Michigan. Jason didn’t have money to put a damage deposit down on an apartment so mom and dad drove 8 hours to MI to help him. They decided it would be best if they moved back here. So now they live here too; in the same house. We have Jason, Karley, and Ali (2 more cats, 3 dogs and 1 bird) all living “upstairs”.

Lets add this up:

*mom and dad and their 3 cats ‘upstairs’

*Jason, Karley, Ali and their 2 cats, 3 dogs and 1 bird ‘upstairs’

*me, Brandon, Cassie. 3 cats and 1 dog ‘downstairs’

So it’s a total of 5 adults, 2 teenagers, 1 toddler, 8 cats, 4 dogs and 1 bird living under one roof! Holy shit!!!!

I put ‘downstairs’ in quotes because the basement is supposed to be my apartment but there is nothing apart about it. No door to separate us from the upstairs and they need to come down here to put wood in the furnace, get food out of the freezer and do laundry. Oh I forget the closet that I could use for storage that they use for their guns…

We give this downsizing trend a run for its money!!!

Back to my story…

You may wonder what all this has to do with Taking my health seriously. It has added a lot of stress. We have cats peeing everywhere, dogs going in and out all day, lack of sleep all around, and people on top of each other. I have to be quiet while Jason and Karley sleep, but there is no quiet at 2 when I nap EVERYDAY. They know it, but again “I don’t look sick” so they don’t cooperate with me.

Stress is bad for lupus. I say this now in case you didn’t know that. Lack of rest/sleep is horrible! I know how much I need 10-12 hours of sleep a night and at least an hour nap every afternoon. This is what allows me to feel good. Yes, just good. I haven’t felt great since 2007. Another thing that helps is following the multiple sclerosis diet. (this is complicated because I have to cook a different meal then everyone else all in one kitchen) It would be easier to follow a good diet if I didn’t need to fight for space in the kitchen and if people stopped eating the fruits and veggies I buy for my meals. Still after asking many times for respect and to leave my stuff alone, they disappear. 

So have I told my ‘roommates’ this? Yes. I’ve tried my hardest to explain how I feel and they always bring it back to things they have wrong with them. Moms thyroid problem is my favorite. She thinks she’s as fatigued as I am all the time. ha! I laugh at her fatigue and I raise her exhaustion! I am very open with what is going on with me. I tell them updates from my doctor, I print out articles on lupus, I look up information in medical books for them and I even shared The Spoon Theory with them. They still think I’m normal and expect normal things out of me.

Do I want them to feel sorry for me and treat me as a cripple? No, that’s not it at all. I want some respect for what I’m dealing with. I want someone to notice I’m having a bad day and offer to help. It would really be nice if they notice I’m trying to nap and be quite or to make a dinner that follows my diet. I don’t think I ask for much. They even make me feel guilty for asking them to drive Cassie to and from dance. Some days just going out is too much for me and them doing that is a great thing. I mean, I moved in here because I’m sick. It took my 2+ years to admit it and realize I can’t do it all. I thought my family would rally around me and help, but that’s not the case. It really hurts me, but if I bring it up I’m an ungrateful bitch.

Do I fake being well for the benefit of my family and friends? Yes, every day! I get up every day and eat, I take care of my dog, I check my email, I try to be ‘normal’ and I at least move about the house. My kids get home at 3:30 and I ask about school and offer to help with homework. I ask about dinner (which is a production with 8 people living in the house) and I buy groceries. I ignore the pain and don’t take my Vicodin so I am not loopie all the time. Trying to act as normal as possible for the benefit of others is what I do.

On January 18th I was in the ER. I really know the routine at an ER. I don’t think that’s a good thing. We discovered that I was having a bout of pancreatitis. This seems to happen before my lupus flares. Pancreatitis is a painful thing. It feels like someone is stabbing me in my back and I feel so nauseous. So they gave me some Vicodin and Raglan and told me to follow the BRAT diet for a few days. I also contacted my Rheumatologist and scheduled an appointment after she started me back on predinsone (yuck!).

So…. My brother knows I have good pain pills and is asking for them for his back. Everyone makes me feel bad for not sharing, sharing is against the law, and no one is concerned that I am going down hill again.

My appointment with the Rheumatologist doesn’t go well. I’m in a full flare and now I can add pleurisy to the things that are wrong with me. I have stabbing pains in my chest and side and more Vicodin to ease the pain. I’m told to take it easy and rest. This is easier said than done while I’m on steroids.

I guess Jason felt left out. He had to make a visit to the ER on Saturday. He was puking and thought he had pancreatitis as well. (He has had bouts of it too, but not as bad as mine) Well it was all do to a headache. He has prescriptions to get filled, but didn’t do it on Saturday. I don’t know why not. One is for Vicodin (for a headache? brought on by stress?) and wants to barrow my pills. OK, I’m in pain but I take 1 every 6 hours to take the edge off. I don’t take them to make myself silly or to drug myself. It’s a tool for pain management. Besides that, I have to bag my doctor to get them. She realizes that addiction can happen and I think that’s what Jason is, an addict. The worst part is that he seems fine. I don’t want him to suffer with a headache, but he seems to be getting them frequently and has not gone in to find out why. I don’t know if I’m crazy, but when I was really sick and the doctor didn’t know why, I was still going to work. I’d drive to work with a bucket and puke on the way there. I did it because they doctor said it was stress and I needed the money to live off of. I didn’t borrow money from mom, have I in the past, yes, but before I got sick, I was doing well.

Am I just a bitch? I mean, I know migraines can be bad, but don’t they treat them with something other than Vicodin? And why treat a headache brought on by stress or a panic attack with Vicodin? I also don’t understand why everyone is like “poor Jason” but when I come home with bad news from the doctor it’s ignored, and never mind that the  pleura that lines my chest cavity and surrounds each of my lungs is inflamed. It is causing sharp pain, almost always when I take a breath.

Now I need to try to get approved for a drug that my insurance won’t cover and get infusions that take 6 hours. Rituximab is the name of the drug and according to what I am reading online it’s in clinical trials. Lets hope I don’t glow in the dark after! My doctor seems confident that this drug will help and bring my lupus back in to a manageable state. We’re on to this drug because of a number of reactions to CellCept, Cytoxin, and azathioprine. I’ve done them all! I’ll tell you about my experiences with them in later posts.

So, now that this post is as long as a chapter in a book, I’ve come to the conclusion that I need to find a mean streak. This needs to be done to take control of my health and I need to do it now. I’ve got to stop worrying about how my health affects other people because they defiantly don’t worry about how what they do effects me. I need to start to put me first. I’ve never done this. It’s always been about the kids, the job, and the family. I need to say no and speak up when people don’t get it until they do get it, even if it means hurting them.

None of this means I don’t appreciate the help my mom and dad have given me, but most of the time they make me feel like I’ve ruined their retirement. Like I chose this or that I’m just lazy and I could really hold down a full-time job. I’m the last person that wants this. I loved working and climbing the corporate ladder. I was proud of my work and how much I contributed to my employers. I graduated from college while working a full-time job and raising 2 children. Being idle is not something I enjoy; it’s something I dread. As much as they don’t want to take care of their sick adult child, I don’t want them to take care of me. But in order to live a long life and see my kids futures, I know I need to be here and I’ll do it as long as necessary.


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