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blessyourlilheart

My life with psoriatic arthritis

Good Vibes Only!

Me: I think a terrible thing is happening to me…

My niece: what?

Me: I think I’m becoming a… morning person!

My niece: 😲 …maybe your just in a good mood.

Me: but I have been in one all week…

My niece: maybe it’s your diet

I honestly didn’t believe that it would improve my mood. I hoped it would give me more energy (who doesn’t want that?!) But I wasn’t sure if it would.

I feel great! I don’t really take naps anymore and I actually feel like I could go to the gym. My motivation is more because I saw that sweating gets out toxins but who knows maybe I’ll turn into one of those people who like going to the gym. (Previously thought of as either liars or delusional)

Then I’ll be a morning person and a person who likes working out (insert shock awe and dismay here)


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Positive News!

I was in so much pain I took ibprophen in addition to my anti-inflammatory and it helped! I feel like my old self 💃💃

My doctor said to limit the amount I took but even so I feel so much better.

My psoriasis is a lot better too. Now it still covers me but it doesn’t itch as much and it’s not as red as it normally is. My doctors laugh when I say it’s not that bad because most people would think it was. It’s relative.

I’m still not 100% vegan but it seems to be helping anyway. I got a couple of new cook books for my birthday so I will continue to grow my recipe knowledge!

I also spent more money to get an all natural face moisturizer. My face constantly dries out and looks awful. I learned somewhere that what you put on your skin goes straight into your body. There are no safe guards in your skin like there is with your stomach/gut.

I actually can’t wait to see my dermatologist and see what he thinks. 

Until next time folks! 💋

Update

I still hurt. My doctor says I have tried all but one of the medicines out there. So she’s going with an old non biologic medicine called Methotrexate.

I took it when I was a kid. I couldn’t remember anything that I didn’t write down and we think it hurt my math skills. I was also underweight.

Her answer to my pain was just take more prednisone. I’m up to 20mg now but I still hurt. 

The good news is that I have lost 8 pounds! Steroids make you gain weight so that’s even more fantastic 😁 

I’m still learning what foods to eat and how to put them together but I’m pleased with weight loss. It’s the one thing all my doctors say will help.

Until next time!

Plant Based-ish… So Far

Today is the first day I have felt (mostly) good. I even took a shower! I know that seems like par for the course for most people but when everything hurts I try to stretch out the time between them.

I am not cutting out all meat. We went tailgating Saturday and I had a couple of Cuban sandwiches. They were delicious! 

But other than that I have been eating a lot of her an beans and some steamed veggies. Oh and oatmeal for breakfast.

Tonight I’m going to pick out a recipe to try and buy all of the ingredients. I’m a little worried I won’t get everything I need if I don’t get a variety. So I need to work on that.

I have lost 4 pounds so far. 

Vegan To Be

So I have cut out most meat and dairy. Most being the operative word.

 I was really excited about this then I got overwhelmed.

I don’t cook. It’s why I hated Paleo stuff. And the recipes take so many ingredients.

So my new game plan is:

1. Keep an open mind

2. Use Pinterest to find easy recipes

3. Pick 1 or 2 recipes to try at a time

4. Keep adding vegan meals until my kitchen is stocked and I have more confidence

Maybe this is a slow way but I feel it is right for me. If I get overwhelmed again I may quit so slow and steady it is!

Forks Over Knives?

It’s October and the weather is changing. In response my body is complaining. But this time my finger tips (some not all…yet) are swollen. My left foot is too. 

Is it arthritis? Who knows for sure but I do know that I am too old to say “owie owie owie” every time I take a step.

I hesitate to say I’m going to do something about it because I have before then either didn’t follow through or only did for a short time before giving up.

There is a documentary on Netflix and I watched it last night. It’s so hard to know who is lying. Maybe it’s a little truth and some lies?

In the documentary people tried the plant based diet for 2 weeks and saw results. 14 days isnt that long right? 

So my go to book place is the lovely and free library and I checked out “The Forks Over Knives Plan.”

I’m going to read it. Really read the whole thing and see how I feel about it after. 

Something has to give and wouldn’t it be nice to not have pills and doctors to worry about?!

To be continued…

It’s Time

It’s Time

I have had arthritis since I was a small child. Most people do not think that you get it until you are older. SURPRISE!

For me, it started in an ankle and progressed to almost every joint in my body. Before it got that far, I developed my first patch of psoriasis (the “p” is silent). It was on my face. (Lucky me!)

Back then there weren’t many medicines so my mom was given a choice to either give me baby IBprophen or gold shots. If she had chosen the gold shots I would have never been able to stop them… I have never heard that given as an option since then so they must have been scraping the barrel for that one.

I started with a rheumatologist and not I also have a dermatologist, several specialized orthopedists, an oncologist (because why not??) and I am pretty sure I have forgotten some.

I had my first surgery when I was 14. It was on my jaw. I had braces and they used rubber bands so that I could barely open my mouth. That was just before I started high school.

During my senior year, I had surgery on my right foot. And the summer after I graduated I had it on my left foot. I started college on a roll a bout. I could have had more surgeries on them but we didn’t.

Later on, I had a minor knee surgery and then about three years later I had some tingling in my arm that let (luckily) to the discovery of a brain tumor. The doctors cannot say that my diseases cause the brain tumor or that the medicines I take for them did. They also can’t say that they didn’t.

What Started in an ankle and one patch of psoriasis now affects most of my body.

Those lovely TV commercials that advertise medicine for arthritis or psoriatic arthritis make it seem like all you have to do is take this and it will get better. Then you just have to hope and pray you don’t end up with one of the MANY side effects… some of which are worse than what you are taking the medicine for in the first place.

My body is so awesome that I take something once and it might help but the next time my body has adjusted to it and gone back to making me miserable.

I have tried most of the medicines. Some work well for my joint pain and others help with the skin. Nothing has “worked” completely so the search goes on.

I used to get clear in the summer when I was out in the sun a lot but that doesn’t seem to be happening anymore.

Today…

I went to the doctor today and she says that my hands look worse but even if they are they can’t really do anything because I am already taking medication. She can have x-rays done but again it won’t change anything.

It’s not the first time I have felt a little helpless. In 2015, I was lectured by my best friend about taking care of myself and changing my diet. I did for a while and though I didn’t notice a change in my disease I did lose weight.

Losing weight is supposed to help. My very nice dermatologist says he knows it is hard to lose weight. Maybe what I need is a doctor to say “Hey, is this the life you really want?! I am trying to help you but it isn’t working so what are YOU going to do about it??”

I started this blog to see how blogging was and because the consensus was it was more interesting to people than books (debatable!) I thought writing about a disease that isn’t really helped by medicine would be depressing.

Maybe it will be depressing BUT I need to do something. I need a hip replacement and it will be easier if I am not overweight. The Paleo lifestyle helped me lose weight. That is a start. I do not really know how to cook but I am going to try anyway.

I try not to complain and this whole post seems like complaining to me but that is not my intention. This is a decision. This is my I have had enough.

Tomorrow is day 2.

Any of you out there ever been where I am?

 

 

It is the little things..

I’m going to see my oncologist today. Am I worried that my brain tumor is back? Not exactly. If it is, that means needles. I recently had blood work done for a steroid shot in my hip. It took them 7 tries!! I have had this hope that one day the infrared vein finder thing would come out and I would no longer have to suffer through them trying to find and sometimes dig for a vein. These people shattered that hope into a million pieces because they had one and still had to call someone else in with dopplar to get it. They usually use dopplar after you are asleep. Guess how fun it is when you are awake! Then I spent the weekend worried that they wouldn’t be able to get an IV. They did, thank goodness, and in the first try. Then I had an MRI and they needed to put dye in through a vein. He got it on the 3rd attempt. So no I’m not worried about the big stuff like brain tumors. I’m worried about needles and veins. 

Snowing

Psoriasis sucks , obviously. It is so thick on my scalp that it looks like its snowing when I run my fingers through it. My hair is also falling out at alarming rates. I swept a small mountain of it up from my bathroom floor and I’m pretty sure its the reason my cat was sneezing. He stopped after I vacuumed. I look like I’m sunburned and peeling but I guess it could be worse. I could look diseased!

I tracked the Pinner test and It should come in today! I really hope it works. I think it takes a week to get results.

That being said, though it is still everywhere, the psoriasis layer is thinner than it has been so I’m very happy about that. I started using T-Sal on my scalp and have noticed some results. More sun this weekend and maybe I’ll start to look normal. My doctor thinks I’m funny because I tell him it looks good when most would just cry. When I say it looks good I mean it ccould be worse. You have to roll with the punches. Tears do not make it better and no one wants to be around a whiner.

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