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Bed Rest Prep

12249679_1195716180579577_864640948855096318_nAnyone who has spent more than 5 minutes with me will tell you I absolutely HATE staying still. Luckily I am headed toward 4-6 weeks of bed rest in 6 days! While I am excited to FINALLY have my foot dealt with I worry about bed rest, logically I know all I can do is prepare to the best of my ability. Here’s what I’ve managed so far:

  • Loose fitting clothes that will fit around a surgical shoe [limited selection, but at least there’s some]
  • Some meal planning of things my husband can cook
  • Stockpiling crafts
  • Stockpiling books
  • Arranging for visits from friends and family
  • Planning my couch nest
  • Working ahead on holiday gifts. Almost everything is bought and wrapped already.

This is all I have been able to think of doing so far, if anyone has experience with bed rest I’d love to hear your thoughts. The longest I’ve ever been off my feet was 2-3 weeks after my double knee surgery.

SIDE NOTE ABOUT PAIN MEDICATION:

As most of you know I went through treatment to get off of Vicodin and Tramadol as it was not controlling my chronic pain and causing issues. Due to the fact that I’m at risk for dependency I have created a dose schedule which tapers my dose and have requested to be put on a less potent pain medication. Mayo Clinic PRC protocol states that use of pain medication in acute situations is permitted. More on this to come.

Something Wicked This Way comes

courageWeird news everyone, in the last month I have had the pleasure of not 1 but 2 steroid packs! Until recently my medication cocktail has kept my RA/RD under control to where it wasn’t a constant issue, this may no longer be the case. My rheumatologist and I tend to use steroids rarely on me as I am overly sensitive to them and get mean, nauseous, and hungry very quickly [not fun]. The fact that she has just started throwing steroids at me concerns me, what worries me more though is that my joints are beginning to feel as though they are being ripped apart again. For those of you unfamiliar with this sensation imagine that there are weights you can’t drop that are pulling your shoulders and hips in ways they do not want to go, but all over, all the time. This could in part be due to my insanely heavy workload at school and the intense stress that comes with that. I’m meeting with my rheumatologist in a month to discuss our options. I have already missed more class than I had hope to for the entire semester, it’s not a ton but it’s more than I am comfortable with. What concerns me more is I am not controlling my pain as well as Mayo Clinic PRC taught me to. There is unfortunately a little seed in the back of my mind that toys with the idea of taking pain medication just until I graduate. Fear not, I have not forgotten how groggy and mean I was while on Tramadol and Vicodin. Nor have I forgotten the lovely sensation of withdrawal, not something I would recommend. Hopefully my rheumatologist and I will be able to alter my treatment plan and possibly switch me from my current biologic agent [Orencia IV] to another biologic. At this point in my treatment we have tried the biologics Humira, Remicade, and Orencia. Orencia has by far been the most successful in terms of effectiveness and minimal side effects. I will post an update on this issue once I have met with my rheumatologist.

REQUESTED BELSOMRA UPDATE:

I have now been on Belsomra for several months with no side effects whatsoever, we did have to increase my dose from 10mg to 15mg. All in all it has been highly useful, I continue to recommend it to people who suffer from insomnia. The only thing I have to report is YOU MUST allow yourself 7-8 hours after taking your medication before attempting to function, it makes me super groggy whenever I cut the cycle short. Other than that it’s been smooth sailing, for any further questions feel free to ask me in the comments or on the RA Supergirl facebook page.

A Chronically Fabulous Wedding

As Some of you may know on August, 1st 2015 Ethan and I got married! I wanted to share some of my favorite pictures from this amazing day. What I was most worried about was if our respective illnesses would act up, luckily that was not the case and my RA didn’t interfere with our wedding day or honeymoon. I’m looking forward to spending my life with this incredible man and am so grateful to those who helped make this day happen.

last dance

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Photo Credit to the amazing Ashley Sunderland, she can be contacted at ashleysunderland.com

Hand adventures [Part 2]!

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So over the past few months I started dropping things and not being able to feel my hands, additionally I started tripping and falling everywhere I went. All put together we were concerned it pointed to MS [keep in mind this is all a week before our wedding. My neurologist essentially said ‘we will table this until after the wedding it’s not going to be horrible but I’m not doing it now’. Flash forward a month or so, during this time I manage to fall down a full flight of stairs twice. One majorly unfun neurological test later we have found the following, my right hand has carpal tunnel [possibly caused by RA], my left hand is allegedly fine [though it’s beginning to feel like the right] and finally I have peripheral neuropathy in both of my feet. For those of you who haven’t had the fun of a neuropathy test it is conducted by hooking you up to a machine that reads your nerve and muscle responses as they shock you with what I think looks like a miniature taser, they then stick a needle into the muscle in key places and have you flew in order to see how the nerves and muscles are interacting. All in all the test itself is pretty interesting and not too painful.

So what to do about these things that are luckily not MS you may ask? Well, I can wear a wrist brace at night to help with the numbness in my hand and I was told to enroll in a aquafit class so I could strengthen my core as that can help with the lower limb neuropathy. Later this week I’ll be working with my massage therapist to see if there’s anything else we can do to improve feeling in my feet.

Happy 25th ADA

ADATomorrow marks the 25th anniversary of the passing on the 1990 ‘Americans with Disabilities Act’. The ADA has changed the lives of millions of disabled Americans myself included. Below I’ve listed a sampling of what the ADA allows for:

  • Equal Access to public building [ramps/elevators]
  • Equal employment with reasonable accommodation
  • Equal access on public transportation
  • Equal access to language for the Deaf [sign language]
  • Telecommunication Access of the Deaf
  • Inability to discriminate against those with disabilities

In short the ‘Americans With Disabilities Act’ has allowed for those with disabilities to be on a more level playing field. I have benefited from the ADA most of my life. In elementary school we learned that not only did I have ADHD but dyslexia to match. I couldn’t read fluently until the 3rd grade. The accommodations I received throughout my schooling for my learning disabilities greatly aided in my education. When my RA started to affect my academic performance my 504 plan gave me the necessary accommodations to succeed. Today I still use these accommodations and benefit from the ADA on a daily basis. Due to this I would like to say thank you to those who pushed for the ADA to be passed and signed into law.

For more information go to http://www.ada.gov/ and http://www.ada.gov/ada_25th_anniversary/index.html

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Hand Adventures and Wedding Jitters

fkphPSrSo first of all I would like to apologize for the lack of posts lately. My wonderful fiance and I will be getting married August 1st, 2015 and things have been crazy. Now when planning a wedding for not one but two people with chronic conditions it can feel like a huge game of chance. Luckily I have had a lot of help from both our mothers and an amazing MOH who has helped plan for everything imaginable. I’m looking forward to a nice relaxing honeymoon and some time with my new husband.

Hands, they matter. You would think this would go without saying however in the last two months my hands have been the biggest party poopers ever. Not only are all my fingers almost entirely numb but I keep dropping things due to the fact that I can’t feel how much pressure I’m applying when gripping something. So yesterday I went to see my neurologist for my botox injections and while getting them told her what was going on. At first she was a little vague saying it could be a lot of things and not to worry. She had a knowing look on her face that gave me the impression that she had a more specific idea of what could be causing this. After a bit of prodding she told me she thinks it could be a few things, the most likely being neuropathy due to rheumatoid arthritis. She explained that most RA patients eventually develop peripheral neuropathy due to the inflammation of the vessels in the hands and feet. She didn’t want to put me through a neuropathy test 10 days before the wedding so I will be going back in a month for some extensive testing. She did say that if I am just now developing neuropathy it could be a sign that my RA is less well controlled than we previously thought. Between that and the issues with my foot [also tied to RA] signs point to me possibly no longer being in remission. That being said just over a week ago I saw my rheumatologist who told me that my hand numbness wasn’t her department. She did however strongly agree with my upcoming foot operation but warned that it would not be an easy recovery. I will post updates as information rolls in.

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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