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Avoidance

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I haven’t been writing. Not here, and not at all. If/when I write about something it makes it more real to me. However I set out with the intention of full transparency when I started RA Supergirl years ago. So let’s get honest, things have been bad. I was in a fender bender over the summer and it kicked my RA up in a really weird way. Then I started the most difficult semester I will ever be in. People in my program tend to average 3-6 hours of sleep and are under immense stress. This has only made things worse on my end. I am failing a class despite making Dean’s List last semester. I’m so tired and my pain level so high that I can’t focus on my assignments. There are times when I become so anxious that I want to curl up under my desk and stay there. I’ve started to develop rheumatoid nodules on my hands, this indicates things may be worse than we thought. I feel like a failure as a wife, I have been too sick to grocery shop for 2 weeks [thank god for Blueapron]. I just started a month-long Prednisone treatment in an attempt to arrest what is going on.

All that aside there have been some positive developments in my world as well. I have an interview for an excellent opportunity in urban education next week. I finally went off the thyroid medication that was making me sick [more on that later]. My crazy supportive husband has been doing his best to help me despite being in grad student hell a the moment. Rosh Hashanah is just around the corner along with the other high holidays, I’m really excited for that. Finally, I started a job as an entomology lab technician, I really enjoy it! As a whole I’m trying to look at what could be rather than what currently is.

I’m sorry this was not an inspirational post, but it was an honest one.

 

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Bed Rest: Week 2

8flkNgqThis week I got my splint removed and got to see my foot! The incisions are significantly larger than I anticipated but are healing nicely. They removed half my stitches yesterday and will remove the remaining ones in 2 weeks. The doctor was impressed with my lack of pain meds [I’ve been off them for a week now] along with my limited range of motion. Apparently my toe wiggle is pretty impressive, it would appear they thought that wouldn’t happen for another week or so. Despite being a fall risk they went ahead and put me in a boot rather than a cast so I could shower more easily. I’m trying to adjust to having a giant boot on my leg while sleeping, not to mention how freaking heavy it is. My fantastic husband wins all the awards for putting up with me and taking care of me.

Muscle atrophy, what is it? This past week we have learned that my calf has turned into a gelatinous blob. I expected some atrophy in my leg but not so severe or quickly. I am less than halfway through my recovery so building the muscle back up is going to be an interesting adventure. I won’t be walking for 3 more weeks so I suspect this will get much worse before it gets better.

The storm systems that came through kicked my untreated RA/RD into high gear and caused a system failure resulting in a random couch nap on christmas. I am so very excited to start my IV in 2 weeks.

I am officially becoming stir crazy and feel like a shut in. I did get some excellent coloring books, a dinosaur building kit, and some books to help distract me.

I’m going in!

                                                         weirdness

Alright gang by the grace of one or more celestial beings I managed to not only attend my two summer school classes but I aced both! I must say I was just as surprised as y’all are, my own family was surprised! I feel more prepared than ever to return to school full-time. This past year I had taken 6 hours of classes and worked 29 a week. I am going in at 12 hours and work 15 a week this semester and things are beginning to look much more doable than before. My grades are recovering from the past 1.5 years of extra health adventures! I owe a lot of this improvement to my friends, family, and PRC family that have helped me along allowing me to start to get my life back, mind you not as it was but as it realistically can be. Knowing that I can function without my illness being the center of my universe has helped a lot.

I will keep y’all updated on how things go as I continue on the ‘abundant adventure’ that is my life.

PRC Graduation!

patrick the wombatHello to all! I can now happily say that I’ve completed my 120 hours of chronic pain management courses and have safely driven back to Oklahoma. I apologize fo such a late update, I’ve been up to my ears in school work and rehab related stuff.

Alright so I graduated from PRC along with one of my good friends I met in PRC, there were tears and encouragements as we left. I was legitimately surprised by the overwhelming support I received upon my graduation from both PRC patients and the PRC staff themselves, honestly it was emotionally overwhelming but also the most support I’d ever felt in my life which really encouraged me as I prepared to go home. Prior to my departure I met with occupational therapy, physical therapy, and my care nurse. When I met with OT we discussed how I would adapt to life back home and how exactly I was going to moderate and modify my life. During my OT meeting it was determined that I am overly involved and needed to scale back, we identified what activities I partook in that could ne modified and what had to go. When I met with physical therapy I completed all the PT tests I had done when I first arrived and my improvement was drastic! PT helped me evaluate what tools I would need to exercise at home. Finally I met with my care nurse [who was fabulous]. My care nurse and I evaluated where I was at overall in terms of PT, OT, group therapy, cognitive behavioral therapy, and medication management. I chose to leave both my Tramadol and Vicodin at Mayo Clinic and go home pain-killer free. It has been a challenge but by no means impossible. Coming home was more difficult than I thought it would be. Not being surrounded by like-minded people who support you in a particular way that only one in a similar situation could provide is difficult. I was doing all my PT exercises until I over did the running aspect and appear to have developed a bunion [which I’ll deal with eventually]. I am still getting back into the swing of things and am worried that 2 summer classes overlapping will be hard for me [that started today] but I know I can get through it. I’ve had a couple bad days since being released from Mayo and I’m not going to lie, I wanted my pain medication. However I managed to get through it with the use of biofeedback and diaphragmatic breathing.

I would like to thank my friends and family for being so supportive of me and helping me get through. Additionally I would like to thank the wonderful individuals I met in PRC who have encouraged me and supported me through my struggles. Without the support of certain individuals I met at PRC I’m not sure I would have made it through the program, I’ve kept in touch with several of them and intend to offer support to them as they did to me.

My ukulele got here in the mail, her name is Penelope and she is bright red. Regrettably my hand stiffness is acting up so learning to play has been temporarily halted BUT I shall prevail eventually! Additionally when I have time I hope to add copies of my graphs showing my progress at Mayo Clinic soon.

PRC: Week 2 Recap

Posted on

rdj on changeSo this week has been an interesting one. About Wednesday I started experiencing [unanticipated] withdrawal symptoms from my Tramadol, on the upside that only lasted about two days and I was doing better by Friday. This is what led to my run. I had talked to Physical Therapy [PT] prior to the Tramadol withdrawal and asked if it was possible for my to attempt to run due to all the hip and leg exercises I had been doing, they agreed to allow me :30-1:30 minutes to run under close supervision. On Friday it was agreed that I was looking well enough to attempt to run. I warmed up and started running on the treadmill with a physical therapist and a student watching me. They stopped me 30 seconds in and corrected my stride in a way that they believed would lead to less impact on my knees. I then ran for a 1:30 AND IT WAS AWESOME! I was sore the next day but that minute 30 was so worth it. PT says I was grinning from ear to ear and even snapped a few pics of me. I was honestly so excited to move that fast again [especially after being told I’d never be able to run again due to the impact on my joints] I was almost in tears with happiness.  I’m not sure if/when I’ll be able to run again due to my pain still not being in control but I’m going to talk to PT about it. In other good news my hand function has increased through use of a “Bow and Arrow” made out of resistance bands that one of the PT’s made for me, having almost a full range of motion in my hands again feels damn near magical. Now for all of the good news so far do know that PRC is still pretty tough. Life feels a lot harder when you don’t have your pain meds to fall back on and I have a lot left to work on.

 

On another note I am looking into new hobbies as a means of distraction per PRC suggestion, I’m thinking of going the ukulele route. Be excited ya’ll!

Quick Spoon Theory Recap

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do not waste spoons
At the PRC today [which I will be posting about later] a woman in group brought up an ideology that I have become very fond of called “the Spoon Theory” while discussing moderation in group. I haven’t addressed this in a while so let us recap. The spoon theory is formed around the idea that an individual with chronic illness wakes up every morning with a certain amount of energy [AKA spoons], the individual then has to carefully choose how their day will be based on how many ‘spoons’ certain activities take. I have found this to be an IMMENSELY helpful tool when speaking with friends and family about my situation. I suggest that everyone takes a look at the original article [link below] whether you’re a patient or a friend/family member.

 

The original author: http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

Pre-flight Check [Mayo Round 2]

its a long road

Alright gang I am officially getting ready to leave for Mayo clinic round two! I have scheduled my finals for the semester to optimize the amount of time I will have to rest and see my friends before I leave. I leave May 10th and will be driving to Osceola, Iowa to stay the night, May 11th I will drive to rochester and check into my extended stay hotel. Monday is when the real fun starts. I will be at the Mayo Clinic Pain Rehabilitation Center [PRC] bright and early for my first day. As I understand it the first day will be mostly evaluating my situation and planning a course of action. There are several core components to the program:

Core components include:

  • Medication management and chemical health education. 
  • Stress management and relaxation techniques.
  • Physical therapy.
  • Occupational therapy.
  • Recreational therapy.
  • Group therapy.
  • Sleep.
  • Biofeedback. [which costs roughly $300 a pop, I need 3 sessions]
  • Lifestyle management.
  • Complementary and alternative therapies.

I will be really interested to see how I progress as the program goes on, my mother will be coming to Rochester to see me during my second week there and will be attending the family portion of the program. I’m not terribly well informed on what exactly the family portion involves. I do know that family members follow patients through their morning schedules and are then taken to a class of their own on Thursday and Friday.

 

I will keep everybody up to date with how my treatment progresses, I am incredibly hopeful that this will help with some of the pain issues and social issues I’ve had [due to pain].

 

More information on the Mayo PRC: http://www.mayoclinic.org/departments-centers/physical-medicine-rehabilitation/minnesota/pain-rehabilitation-center/overview

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