Tag Archives: MRI

List of my insufficiencies

Kermit. Miss Piggy. Animal. Rowlf the Dog. Beaker. Fozzy Bear. The Electric Mayhem.  Statler and Waldorf. Rizzo the Rat. The Swedish Chef. (Just to name a few.) If you have ever seen any of the Muppet movies or The Muppet Show episodes, I am sure you can envision the characters, the voices, the humor. And sometimes God uses the strangest Muppet analogies to give me humor in spite of my insufficiencies.

This past weekend, I started my notes of things that need to be discussed with the doctors tomorrow. I see a team of different specialists: my main doctor for the MRI results and treatment plan; a pain team management doctor for the tumors in my hands and the pain in my neck/upper back; a follow-up with my doctor for the blood clot and a few others. It is a long day–early to late in the afternoon with all the evaluations being meticulous, but repetitive. There are the talks of future possibilities, different treatment options available, different steps or things to watch. My brain about half through goes into standby. So I started bringing a list. I do better with lists. I am a note-taker person. It helps me focus and understand or stay awake. 🙂

So this list is all the changes that have occurred in my physical body since my February visit. After my scribbles of a list was finished, I put my pen down and cracked my knuckles. (I know you are not supposed to do this, but it feels good and I figure my fingers are already worse off anyway.) I look at my hands and start to laugh. Out of nowhere I remember my MRI experience from last Thursday. That day, I thought I would take a nap during the scan, but the technician asked if I wanted a movie. I looked at the list anyway and figured I would just watch something fun and that I have seen before so if I fell asleep then it was no big deal. I skim the options fast and choose what I see as “Muppets.” Now assuming this was The Muppet Movie, I get cozy with my arms strapped in and headgear set in place. The movie starts and this is no Muppet beginning…it is Muppets from Space and I think, “Oh boy. I haven’t seen this in forever!” The first fifteen or so minutes, I was breathing so hard through my nose, because it was the only way I could keep from laughing!

I did end up falling asleep during the movie, but I don’t think I would have ever thought of this on my own if I had not watched that particular movie, because unlike the other movies where Kermit and Miss Piggy are the lead characters, this time it was Gonzo and Rizzo the Rat. Gonzo. Classic character. Classic nose.

gonzo http://www.imdb.com/media/rm2902164736/tt0158811

See that nose? If you are wondering how my left ring finger now looks as it continues to curl in–think Gonzo’s nose. It matches. Find the humor in the analogy and laugh. It’s ok, because I already did.

In making my list for the doctors, I found the “head and shoulders, knees and toes” song was the best way to organize my list so I started with my hearing; then my neck and upper back–more pressure and getting hard again to stand up straight or hold up my chin; my arm and hands–besides the “Gonzo nose” finger, my left middle finger has significantly started to curl as well. Whereas my right hand just went completely numb to my elbow making things like holding pens, buttoning my pants, putting in bobby pins, holding cups or texting, holding my toothbrush, tying my shoes, pouring coffee from the pot and typing more of a daunting task than they should be. My bowels still deal with constipation; and my legs/feet are weak. I can hardly get up off the floor or when I bend over to pet Muffy, if I am not holding on to something then I easily loose my balance and occasionally just fall over. Strange though, I have not had any pain spasms–Charlie Horse cramps in the legs–but no pain spasms!

I usually look at my list and I see my life becoming less independent. And if there is one thing in life that would be the hardest to surrender, it is my independence. It was the reason last year that I struggled so hard with moving back home. But where I could only focus on the losing part, God had bigger plans and he has been helping me to see that I can still live fully on my own. I just have a few speed bumps that take a bit slower t0 get over. Yes, there are days when I am completely frustrated at my hands or cry and say, “A 25 year old should not have this problem!” (like not being able to button my pants.) But to see past my insufficiencies helps me to see how blessed I truly am, because I have resources available to help and when the resources can’t, my family can.

Over the past few months, things of this have been changing: I got my own plates, bowls and cups that I can hold better; I have my special silverware and we just ordered more because I constantly use my fork and spoon now as it is. (See utensils here.) We also just ordered a button hook so I can button my pants; coiler elastic shoelaces so I don’t have to worry about tying my shoes or bending over when they come untied; and I bought hairbands so I don’t always have to use bobby pins. If I go clothes shopping, I have to be able to put the outfit on myself or I don’t buy it; I went back to wearing dangling earrings, because most often they don’t need backs so I don’t have to worry about trying to hold the tiny piece of metal; I gave away all but a few cd’s as I came to a peace about losing my hearing; and have been getting really good at finger poking at the keyboard when my hands otherwise are too tired or cramped to type in a normal fashion.

I don’t know what kind of results tomorrow will show or what I will be doing in this next month or the rest 0f the year, but as I gather my list of insufficiencies, I remember that when I can’t…He can.

I think I can’t, I think I can’t
But I think You can, I think You can
I think I can’t, I think I can’t
But I think You can, I think You can
Gather my insufficiencies and
place them in Your hands, place them in Your hands, place them in Your hands

~Relient K, “For the Moments I Feel Faint”

Other resources:




Filed under Adjusting to NF2, Books and Movies, Hospital Trips

I have decided.

Hi everyone. Just wanted to give you a quick note this morning before I head out for the day. I have to go down to the Liberty Children’s campus (about an hour drive) to get some lab work done and then my MRI is at 4pm. So this will be another long day, but needs to be done. I actually fall soundly asleep during my MRI’s so I really can just look forward to a few hours nap. 🙂

I have made my decision about whether or not to have the surgery to remove the clot/see if a stent is needed. I really struggled with my decision. My darkest fear is being put to sleep…bad experience from the last surgery to place my medi-port in caused this. I talked with my family Saturday night and was really honest with them. I think too I was still not understanding how the anatomy and procedure works, so I got a more clear understanding on that as well. But I still had to decide.

As I got in bed, I made a list of pros and cons and did some thinking. In the morning while I was doing my devotions God kept bringing me back to Psalm 4:8, “In peace, I will both lie down and sleep; for you alone, O Lord, make me dwell in safety.” I looked at my list of pros and cons. If I truly did have more pros than cons, and if the fear was the only thing holding me back…I figured that was pretty lame. God gave me an overwhelming peace about my decision. Through the course of the day–discussing more things with my family…calling my sister and thinking of things ahead, I see now that this is a good thing. There are many positive aspects of doing the surgery and so being now at peace, I am ready.

I do not have a date yet, but it will most likely be at the end of this week. I will keep you all posted. Thank you for your prayers this weekend about my decision. Please continue to pray for my family as this is a lot for them too and quite frankly–we are exhausted.

May all your expectations be frustrated.
May all your plans be thwarted.
May all your desires be withered into nothingness.
That you may experience the powerlessness and the poverty of a child and sing and dance in the love of God the Father, the Son and the Spirit.

*Prayer over Henri Nouwen by mentor.

More to come…


Filed under Adjusting to NF2, Family Times, Hospital Trips

“Sometimes the night was beautiful…”

What a week!! Quick recap of big events:

I bought myself my first pair of sunglasses!!! I think they are pretty cool. 8-D (Yes, they go over my glasses–but they work great!)

I finished a painting. I tried Snapple’s new tea: Bret’s Blend Tea–Trop A Rocka. It has mango, pear, peach and cinnamon flavoring. Delicious! I got to talk to some friends from CO. My little sister comes home from college tonight! 😀 So exciting!!! 😀 We got to see some family friends who are in town and had dinner with them. And the biggest event of the week: yesterday’s hospital trip.

I had my annual 3-month MRI and doctor visits. It was a LONG day! I checked into radiology at 6:30 a.m. for my MRI. I got out around 9:30. Got a nice bruise on my right arm from the IV they used for the contrast. Went up to my regular doctor visits that lasted until 12:45 pm. Ate my sandwich on the run to my 1pm appointment for an ultrasound on my left leg to see how the blood clot is doing. I got out of there at 2:30. Back up for one more appointment and finally got to leave the hospital around 4 pm something. I was so tired by that time that as soon as I got in the car, I fell asleep. Thanks to my dad and mom for being there, because while I was sleeping, they were stuck in rush hour.

The day, although long, went well. It is my own battles of striving to be independent that cause me to build a defense wall when I attend appointments, especially when they are Occupation Therapy concerned. I like to do it on my own, even though my body is changing. And for me, it is harder to except the fact that my body is changing and getting more slow, than it is for me to adapt to changes. For example, when doctors ask me if I have noticed any changes…I say the obvious ones that I might be concerned with or notice getting harder to do. Then they ask my parents and they say things that I really have not noticed, because most often either I am used to it by the appointment so I forget the changes or I just don’t take note…like I can’t see myself walk, so I don’t notice how my right leg and ankle are working or seeming different. I am not mad at my parents for speaking these things, but my first initial reaction is to clarify with justification and try to prove that I am doing just fine. It is a hard day to sit and discuss about all the big to tiny changes noticed. It is not that any big steps are taken towards these changes–it is just discussing them. I think what frustrates me most is having to talk about all the options out there–possibilities–for when the time comes that I do need more assistance in maintaining my independence.

Independence. The word in itself is what I fear most I think. The thought of losing my independence causes me to strive to work harder to maintain what I can do right now in life. Like driving. The weeks following my blood clot, I could not drive and I struggled! When I was ready, driving and taking management of my schedule helped me get back towards feeling independent, even though I had just let go of my apartment. God only knows the future. He knows when I will need help and has surrounded me with an amazing family who helps me in more ways than I probably recognize and a team of doctors who have resources to help me as well. I just hope when it comes to that time, that I will have let go of my pride and recognize that I will need help. And not all help is bad. Not all help classifies me as helpless. Not all help labels me as disabled. The assistance at that point in time will enable me to continue to live independent for as long as I can. I must learn to embrace help, not build a defense against it.

I have not received the results for my brain and neck scans yet, but scans of the spine were stable. And the left leg shows stable as well. This is a praise!!! 🙂 Thank you for your prayers!

Last night before I went to bed, I went out to feed Muffy. The moon was bright, stars were shining, and it was a lovely warm evening!!! I sat on the patio and started humming Rich Mullin’s, “Sometimes by Step”. Of all the day’s worth of emotion, chaos of schedule, and long discussion…it was so nice to sit in silence. Just for a few minutes. No thoughts of the day spent or thoughts of tomorrow. Just a deep breath of wonder realizing how tiny I am in the universe, yet God knows me by name. He loves me and takes care of me. I am so blessed.

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Filed under Adjusting to NF2, Books and Movies, Hospital Trips