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blessyourlilheart

My life with psoriatic arthritis

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.

Pinner test

     My sister cane over with a flyer for a food intolerance test called the Pinner test. It’s really expensive. I went on the website and started to order it then saw the price… $490! So I backed out but they still had my info and called and emailed. Since I didn’t respond they offered a discount. My doctor (the regular family practice one) said she was neutral about it. Since I have been considering this test I have noticed my psoriasis change to an angry red after I eat cheese. It’s a shame because I love cheese.
     My best friend once said I always order the cheesiest thing on the menu. You can’t go wrong if it has a lot of cheese, right? She’s also the one who told me to try paleo. I have seen on some sites that you can have tests done if the AIP doesn’t work or work well. If I can eat something that will make paleo easier without having to add it back in later that’s what I want to do. It could be a waste but my niece’s dietician believed it worked. We shall see!

Flaming Tuesday

Today my psoriasis is red hot. One of my coworkers promptly pointed it out that my face was more red than usual and wanted to know why. I don’t know. In the past my fanciful imagination led me to think it was because my medicine was hard at battle with it but today I’m thinking more realistically that its a flare up. From what and what to do about it? Is it what I’m eating? Was it the sugary snow cone I had? I have been looking into the paleo diet. I lost 27 pounds on it last year but no one talks about how you pay your medical bills while paying for grassfed everything. Yes, they have tips…. Make a list, only buy what you need etc. AIP Paleo means no eggs or nuts or seeds. I guess it is worth a try. Maybe I’ll eliminate bread and cheese first then move on to other stuff. There are some videos on YouTube that show you how to cook some of the meals. I’ll need that so I don’t waste groceries on failed attempts. In the mean time I’m going to take the turmeric pills and see if they help the inflammation.

Recovery… Kind of

I feel so much better! That is not to say perfect. I took a dose of Enbrel Thursday evening and by Sunday I actually felt like a human. My knees still hurt some and my hip but that isn’t arthritis anyway. Unfortunately, I think I have discovered why I was having vision problems the past year or so that I was taking Enbrel. My psoriasis is a smidge better but I did not expect more as its only ever helped with it not cleared it. I have been trying to swim and get some sun but I’m freezing most of the time so its hard to stay in the water and then the wind once outside the pool. I’m not sure what to do about this. My only plan is to try and lose weight ASAP and hope it helps.

Oh the pain!

After I wrote that last post, I went to my dermatologists office and he said that the ACV didn’t work. All of my motivation to try it went right out the window. Even with honey it is still gross. Neither the Turmeric pills nor the soap made a difference that I can tell. My doctor was really pushing Cyclosporin and at a higher dose since I was no longer on anything else except an anti-inflammatory. That was not enough and after awhile I expressed my wish to go back on Enbrel (oh the horror of a biologic). I know a lot of people don’t want to use them because they COULD cause a lot of stuff but my neurosurgeon had never had a patient that had been on biologics before. Otherwise healthy people get cancer and brain tumors. So my doctor said I could go back on Enbrel in 2 weeks but in the mean time he wanted me to take prednisone. After having gained all the weight I had lost earlier back from the previous steroid treatment I wasn’t a fan but for two weeks, fine.After 3 weeks I called the doctor’s office again and it changed to he didn’t want me to go back on Enbrel until he saw me again. At this I wanted to scream, looking at it now that could have been the steroids talking. So I told him I was stopping the steroids since I did not want a giant swollen face like I had before. I knew I wasn’t supposed to just stop them so I lowered the dosage until I was off. My skin flared so I guess it wasn’t slow enough. I had a trip to see my niece graduate high school 15 hours away. Each day I felt a little more pain. At first I was like I got this I can take it! However, it took me 3 days to recover from that trip and I was miserable. My doctor even said I looked miserable when I finally went in to see him. Then it  took almost a week to get the medicine in. If you don’t have arthritis then you don’t know what it’s like to wonder if you can stand back up once you have sat. I found myself working standing up if I wasn’t going to sit for long because it didn’t seem worth the effort that it would take to get up again. The doctor gave me pain pills. Take 1-2 every 4-6 hours. They lasted 3 hours per pill. I only took 2 when I was going to sleep because pain or no pain I still have to function. That didn’t last all night. I was so desperate that I took prednisone last night with the turmeric pills. I was so excited that I felt better I thought it was the turmeric but really it was the steroid. I grew up taking that from age 12 o 18. I never understood that the reason I thought about food all the time was because of that. I thought that it was me. After I lost weight at the beginning of 2015 I stopped thinking about food so much so I noticed when it happened again. I never want to be in the position to have to take it and when I feel better I am going to work on losing weight to help my psoriasis and my joints. I am already changing what  eat but I hope that the Enbrel will enable me to move more and burn more calories. I took my first dose of Enbrel today after work. It isn’t immediate but I have hope that I will feel better soon.

Trying Something New

I doubt I will ever get the story of how it all began from my mom so I am going to attempt to chronicle trying something new for my psoriasis. Last year I found out that I had a brain tumor. That led to 2 surgeries and after each I was given a steroid that cleared my psoriasis within 3 days. Now having it sucks but when its your normal you just deal with it. I found that it is very hard to go from clear skin back to being covered from head to toe. I was put on a new biologic medicine called Cosentyx. It worked… right at the injection site and that is pretty much it. I was on it from June 2015 until January 2016. I asked my doctor how long it would take to work and he said it should have been working so I stopped it. I was also worried about having to pay for it so that was a side bonus. We tried the steroids again but at a smaller dosage they didn’t work as well and I experienced a lot of side effects such as migraines. Also, after awhile I looked swollen in the face and I gained about 20 lbs.

So in my recent desperation I have again gone to http://www.psoriasisblob.com. It has reviews of several products and tells the story of a man who is controlling his psoriasis through diet and certain supplements. The two I am going to try are the Apple Cider Vinegar and the Turmeric capsules. Oh I also ordered the charcoal soap. I have tried the ACV before but I did not read the part where you add honey to it so I didn’t stick with it because it is gross. However, since so many say it does wonders I will try again, with the honey. I tried the soap this morning and like it so far but only time will tell. I have been taking the turmeric pills since Saturday. I am attempting to cut out dairy and wheat from my diet but I’m not super motivated even though at the very least I know it will help me lose weight as it did at the beginning of last year.

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