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Could We Not

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Alec Baldwin whiskeyAs some of you may know due to my Orencia and other medications that I require to maintain basic function sort of rule out biological parenting. Some in my position opt to discontinue their medications in order to become pregnant but can never take them again due to the immune system developing antibodies against them [this is difficult with my severity]. Additionally both my fiance and I have genetically linked health conditions which we feel are irresponsible to pass down [between the 2 of us we have 3 types of arthritis]. It is due to this that after my fiance and I are married permanent measures will be taken to assure no pregnancies occur. That being said it would appear that the closer we get to the wedding the more individuals feel they have a right to ask when we will be procreating. Now I’ve never felt that marriage and parenting were synonymous, they are two very different types of commitment in my eyes. Eventually my partner and I will have children via adoption but everyone feels they are entitled to ask us when we will “start trying” as we approach our wedding date. It is difficult for me to essentially be infertile in my early 20’s and even harder when everyone feels they have a right to inquire as to our family planning. We have developed some pretty solid party lines for the time being such as: “Well we are waiting until I graduate” or “we want to be a couple first”, while both of these are true it tends to dissuade nosy individuals. The point is people need to stop inquiring as to strangers reproductive choices, it is frustrating and can be hurtful given the individual’s situation.

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Two doctors walk into a bar…

taxidermy for the ladiesAlrighty! So I went to both my Neurologist and the Rheumatologist yesterday and we learned a couple things. First I saw the neurologist who thinks that the pain issues are related to RA, she wanted to hear what the rheumatologist said. This is the part of the story where I tell you about the longest rheumatologist appointment I have ever had including the one when she diagnosed my RA. We sat there talking about specifically what type of pain it was what I had done for the last 48 hours leading up to it, what was going on in my life, school, work, everything. The best pain descriptor I could come up with was it felt like I was in a hamster ball full of stalactites. She believes that this was a pure Fibromyalgia flare up worse than any I’ve ever had due to the increased stress of failing my first college course, my boyfriend graduating, and the intense cold in the area I live in. She did an incredibly thorough physical and showed that NOT A SINGLE ONE of my joints was swollen granted I had had my Orencia IV two days prior. We did discuss the possibility of me having a minor RA flare as an explanation and she expressed that if we found swollen joints in the near future that she would want to change my IV to Actemra [I feel Orencia is doing a great job though]. The end result of the appointment was no medication change for the time being and both doctors urging my to go to the Mayo clinic’s ‘Pain rehabilitation center’ for the 3 week program. I will be resuming my yoga in an attempt to help with the day to day pain and we will re-assess my medications in 3 months once the cold weather is really gone. On the bright side while I’m not thrilled about not being able to fix this with medication at least I’m not on Methotrexate injections again.

Keep on walking 😉

‘Super Better’ and why it matters

happiness dumbledoreLong time no talk fellow spoonies! As some of you may already know this winter has been very hard on me in that I have been flaring up, isolated, stressed, and cold [Oklahoma winter’s don’t mess around]. I’m not as bad as I’ve been before but have been on a steady dose of Tramadol and more Vicodin than I’m happy with. A couple weeks ago I was bad enough that I had to be taken to the ER for a shot of Morphine [which did nothing], Ativan [which did EVERYTHING], and Benadryl in order to get me to where I could at least rest. Luckily for me that was enough to break the pain cycle enough for life to be better for the time being.

Let’s talk about ‘Super Better’. ‘Super Better’ [SB]is a game made by a game developer who was struggling with deep depression brought on by an improperly healed concussion which left her in a lot of pain. She created the game as a way of coping with circumstances she could do little to change. Now while she doesn’t claim it ‘cured’, she does say that it made the mental aspect of it much more bearable [As explained in this TED talk http://www.upworthy.com/the-secret-weapon-a-woman-created-to-save-herself-from-the-brink-of-suicide-2?g=2&c=upw1]. I am just now starting to play SB on my phone and will update as things get better/or don’t [for $4.99 I think it’s worth a shot]. In her TED talk the creator of SB Jane McGonigal claims to even be able to slightly extend your life by creating more positive emotions in your day to day life by completing the ‘power-ups’ in SB such as ‘chug a glass of water’ or ‘got a block? walk around it?’, little ‘power ups’ like this add to your overall wellbeing. You also ‘battle’ bad guys like ‘liquid calories’ and ‘the self-critic’. I’m still working on how exactly this program works but it seems pretty cool so far.

https://www.superbetter.com/

Feed Me Seymour!

singing camelsAs anyone who has ever been on Prednisone will tell you steroids make you want to eat your way through everything that even resembles food while simultaneously running around in circles [okay that last bit may be just me]. I typically do my best not to take it as it really upsets my stomach and tends to make me a little crazy. Well once again in the wake of a massive flare, I have found myself riding the Prednisone train. My rheumatologist is worried that it may be more than me just reacting to storm season and is concerned that this is a sign that I’ve built up a tolerence to Orencia like I did with Remicade, this is worrisome as there are only a handful of RA medications that I haven’t been on yet. I’m not even sure what to do if I run out of potential RA medications, clinical trials won’t take me due to my high white cell count, my low red cell count, and my latent TB. I’m doing my best not to focus on the bad and continue to eat my way through this very large container of tofu pad thai. T-minus 13 days until the Mayo, fingers crossed ya’ll.

Mayo Clinic part 1

Mr. RodgersAs some of ya’ll may know I’ve been looking into going to the Mayo clinic is Rochester, MN for a while. A lot of my symptoms don’t line up with the sole diagnosis of rheumatoid arthritis and I need answers so I can start getting better. After jumping through a few hoops and dealing with all sorts of shenanigans  I finally got things sorted. So I am happy to announce that 3 WEEKS FROM TODAY I will be at the Mayo! For anyone who hasn’t been sick for a long period of time it may seem odd that I want nothing more than to go to a hospital for a week but the Mayo is a symbol of hope to a lot of us who are running on empty.

So far I’ve concluded that Kayak.com is wonderful in the planning of trips and that Delta airline may actually be the devil. The appear helpful, but they’re sneaky… and horrible.

Throat Ulcers: Because why not?

money slothThroat ulcers, because why not. My throat has been killing me for 2 weeks and I’ve been toughing it out until today. I went to the urgent care near my house [I don’t have a GP in town yet] and it took him all of 10 seconds to tell me I had major throat ulcers that “could have been brought on by anything’ I then told him about the chemo vs. thrush sores that have been an issue and he said it wasn’t related to either but could be RA based or a complication from the immunosuppressants. He said it could be a long term issue and that he could treat but not cure them. So as the situation stands I’m just using a ton of magic mouthwash [which is a liquid combination of Lidocaine, Kenalog-4, and diphenhyd] and hoping for the best.

Trigger points. Bam Headshot!

come at me nighthawksYesterday I had a trigger point injection of Lidocaine injected into my scalp above the left occipital bone on my skull. I’ve been having muscle spasms at the base of my neck leading to terrible migraines, my orthopedist [who has been helping with my Fibro symptoms and neck pain for about a year] thought this would be the most effective way to treat it immediately. I see my rheumatologist this Friday to make sure that I can double my muscle relaxants, so yay for that!

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