Tag Archives: things to help you live independently

Lifeline

Yesterday morning, I spent two hours at the hair salon getting my perm redone. For the amount of time taken, the result looks lovely (and bonus points to me as having no sense of smell fully pays off in these instances.) Nearing the end, I had twenty minutes of waiting, during which the solution needed to soak into my hair with the curlers still set in place before my stylist removed them. I asked the lady sitting next to me if she could pass me a People magazine…just something to glance at as I waited. “Pointless readings,” I tell myself, but I didn’t read much anyway as I didn’t have my glasses on at that moment.

I did happen to find one good article about a girl my age who lives with Down Syndrome. As I skimmed the blurry article, I was impressed by her courage not to let the disease define her; she had even gone to court to declare her independence rights on choosing where to live. I don’t know her name or the edition of the People Magazine for quotes, but I do remember reading a few sentences where she states that she is an independent person–she just might need a little help sometimes. I had two thoughts: First, I fully relate to what she is saying. She and I may struggle with vastly different physical limitations, but there is a common understanding both in emotional and mental thoughts of what it means for independent living. And second, whether you struggle physically or not, don’t we all have moments where we might just need a little help? It is our human nature; it keeps us humble.

When I first moved back in my parent’s house, I thought I was losing all independence. It took time for me to process that I never lost my independence; living at home ensures that I can live independently. Yet, I am surrounded by family who can help if I just might need it: opening zip lock bags or medicine bottles if Walgreens places the lids in the wrong direction; putting on my compression stocking or clipping my toe nails; carrying my groceries up the stairs or my full laundry basket to the washer. Or in the event that I have car problems, need to get Muffy’s food from the patio but it is dark outside, I accidentally break a dish while loading/unloading the dishwasher…help is there as well. It is safe independent living.

hermie “I’m…independent!” (samefacts.com)

To maintain continual safe independence–while at home–I now wear a Lifeline necklace. Wearing this necklace does not change any part of how I currently live. I still get up in the mornings on my own; bathe and dress on my own; make myself meals and, of course, the morning pot of coffee; I can still write (chicken scratches), type (finger poke), text, and paint; I still climb up and down the stairs, even if it is a slow one-step-at-a-time; and, I still drive, run errands or go to church on my own as long as I have the energy and weather permits me to do so.  The Lifeline’s purpose is to inform others if I needed help–the communication is accurate and efficient. The necklace works only at my home (garage, basement too) and outside property. Once I leave the driveway, I am too far from the sensor for any signals to send.  However, being out in public, my chances of being all alone are quite slim. 😉

When we first set the Lifeline in place, I was confused as to how I, personally, talk with the personnel over the communicator (set up in my parents room) as I am Deaf. I really do nothing, except push the button on my necklace if I need assistance. The personnel from Lifeline contacts my parents through the communicator and notifies them that my button was pressed, so they can check on me. If no one answers that machine call, they immediately start calling my emergency contact numbers in order; my mom’s cell phone is first, etc. In the case I fall and I am unresponsive, the sensor on my necklace cues in on this and Lifeline automatically sends emergency medical help. It is safe independent living.

Lifeline is unlike a regular 911 emergency contact. It doesn’t have to take a catastrophe of epic proportions for me to push my button for assistance. It can be something even as simple as accidentally breaking glassware while doing the dishes and not being able to safely step away from the glass; if Mom is outside working in her garden, how would she know I needed help? The necklace is also waterproof, so I wear it in the shower. It is only by God’s goodness and perfect timing that my parents were still at home on that Sunday morning when the first blood clot hit as I was in the shower. Because I was hyperventilating and had my left arm slung through the handle on the shower wall in order to stand up straight, the only way I could contact for help was to bang my right fist against the shower wall. At that time, I didn’t even think it was being heard. After a few solid bangs, my mom finally decided to check in on me. You can see the importance of having this in place as I continue to live independently.

Although Lifeline is often aimed in advertising for the elderly, I know for myself–and the family–wearing the necklace puts ease in the mind of constant “What if’s?” It reminds me of my times in prayer. I don’t have to wait for epic catastrophes in order to present my requests to God. Prayer replaces the “What if’s?” with constant peace.

The Lord is my chosen portion and my cup;
you hold my lot.
The lines have fallen for me in pleasant places;
indeed, I have a beautiful inheritance.

Psalm 16:5-6 ESV

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Filed under Adjusting to NF2, Family Times, Uncategorized

Salad bar and pizza toppings

This month, my big canvas paintings have been hanging in a pizza place, called HaHa Pizza, in Yellow Springs. I have only eaten there a few times, but I have never been disappointed. They offer pizzas of all sorts; you can get your pizza on homemade wheat crust (my favorite) and load up just about any toppings for your slices (I haven’t tried eggplant on mine yet…maybe next time I will be brave.) If you feel like you forgot something, you can just head over to the salad bar and choose from all the fresh and local toppings offered there. I think most people around here agree–the salad bar gets five stars!

Yep, HaHa Pizza adds a few more reasons to my list of why small towns offer greatness: Friendly workers, local art, laid back atmosphere, mustard yellow walls (ok, that sounds weird but it adds character and it is one of my favorite colors). 🙂 At any rate, it has been my first time displaying my art in Yellow Springs, other than the art shows. I am thankful for the opportunity I have had this month at HaHa Pizza. I hope to get the chance to work with them again in the future.

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My Home Care OT reminds me of salad bars and pizza toppings. Life otherwise would be plain cheese or standard greens. I did not want to start OT at first. For my first session, I presented a lengthy list of things I can’t do and things that are almost to that point. My OT set out to work and today we went back over the list…we had solved almost all of the problems by getting the correct accommodations to give me a boost for continuing to live as independent as possible.

I still have a few items that need to be ordered: a new button loop as mine broke; a zipper pull and zipper key loops that would attach to my jackets I use often; more utensils with rubber grip handles; tylastic shoelaces; a fingernail clipper board (it positions and holds your fingernail clippers for you if you cannot); and removable handles for holding glass cups. These are things that I feel I would benefit from as my hands continue to weaken.

During my OT sessions, we talked about many alternative ways to do things. For example, there was a lamp in the living room that I could no longer turn on or off. My OT brought in this remote control switch that is actually for your Christmas tree lights and set it up on the lamp. Now, when I need to turn the light on or off, I just click a switch. Genius! You would assume we would have thought of that on our own. Sometimes a fresh perspective is what is needed.

She also helped me solve my problem of tearing open things (like bags of food), most zip lock bags, and turning book pages: rubber finger tips. 🙂 Next week is my last OT; she is bringing more of these but a larger size so that I can try to wear one on my thumb as well…this may help when I put in my right hearing aid. We also solved my holding a pen problem with new rubber grippers as my pen holder (yes, was lost but found) was giving me more frustration than assistance. My handwriting is still wobbly, but more legible. 🙂 And last, because it is my favorite…a handle for my Tervis, as I use it more often than mugs (morning coffee). The handle allows me to use all my fingers to grab hold, where mugs I can only use two fingers, and it gets interesting (plus a Tervis has a lid reducing spills!)

Funny part is, these things are always at the store…they are nothing special, unlike the specific ones I have to order. But if you are not aware of them or seeking them specifically, they can be overlooked…like so many delicious salad bar or pizza toppings. Home Care OT helped me become aware of this–that living with weakness is livable.

And my God will supply every need of yours according to his riches in glory in Christ Jesus. Philippians 4:19

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Filed under Adjusting to NF2, Paintings

It’s like lab work…Part II

Yesterday morning, my mom, sister and I set out for Cincinnati. My first appointment at Children’s was at 10:30am, and although it turned out to be a very long appointment (which I am used to), it really helped in understanding more of the treatments and a few ” for future reference” ideas from my social worker in the case I start getting to a point where more help is needed in daily things.

Whereas last appointment I was emotionally calm, this time I seemed to be an emotional wreck. In discussing the chemo treatments and steroids with my doctor, I burst into tears as I tell him the thought of me not being able to be on steroids (which are moderately helping as much as they can with the pressure from the tumors) is just unthinkable for me. How will I function? Then I turn right around about an hour later and get upset when we start discussing the options for receiving help in the case I am no longer functional, such as areas like getting ready in the morning or in the event I need to stay home alone and need someone to be there just in case I need help. I blurted out defense, “I am fine on my own.” Yes, but for how long. I see now that these decisions also affect my family and although I rely on them and they will do anything to come to my aid…there may be a point in time when they just need to be family and I can get more professional assistance. And thinking that way bugs me. So I ignore that fact, when I may someday have to face it.

I felt yesterday was a more typical doctor appointment. It was like a teeter-totter. I had my concerns/fears on one end and I had my push to continue to try hard when things are slowing down on the other side. I don’t think there is a right and wrong to this equation…but I realized the continual need for keeping this in balance is important too and that balance comes best when I lay aside both my fears of the unknown and my defense wall and focus on what God sees. Some nights I get in bed and have relief when I say, “God is not finished yet…” and other nights I just get in bed and cry, telling him that I am not sure how this is going to work. I think I took both these emotions with me yesterday even though I am at a peace about starting the treatments. I think too that because my body has been changing, I have been fighting harder against it and putting a “state of emergency” on getting treatments started to see if they help. Again, I have no control of this, but getting that into my heart and mind is a difficult task. Something I am struggling with and have in the past.

In general, I can’t say that I can give you much details about the chemo, Sirolimus. To be honest, I think I found the statement, “Third time’s a charm,” to be false. This is the third time that I went over the chemo treatments and side effects with my doctor. It was a bit overwhelming. I understood everything but it is very detailed this time with specific instructions that I am nervous. My RN assured me in an email this morning that the process will make better sense once we get started. And it will not be like Avastin where I go and have one day treatments then recuperate for a few days, get back to normal living and then restart the process in two weeks. This chemo treatment will be taken at home (which I also learned that it is a solution, not a pill) and I will be taking it more frequent than once every two weeks (like Avastin).

As we discussed side effects again, my doctor made it very clear that very few have started the chemo while being on steroids treatment at the same time. However, because I don’t have an option to stop steroids at this point in time (I guess I do but highly unwise), the team of doctors are going to be monitoring my blood levels from labs and anything that I email of things noticed, because this chemo affects your immune system and they do not want me to get infections of any kind, especially in the lungs (could lead to pneumonia). Most of chemo will be regulated by labs and blood levels..it will be a slow process, but still the hopes I do well on it and possible halt of tumor growth.

A few of the other side effects I will be given more instructions on what to watch (such as sores in the mouth, fevers, headaches)…and I was given specific instructions that I was not allowed to drink grapefruit juice. Still not sure why, but it does not harm me any as I don’t like grapefruit. 🙂 The plan for now is to get labs done on Monday, and as long as everything with labs check for an ok to go/insurance for the medicine then I am set to start this Tuesday, July 2nd.

The second part of doctor appointments was getting my much-anticipated Phonak Cros! I was a little concerned about the (probable) loss of hearing that I don’t think I was as excited about it as I was a few weeks ago. I told my audiologist first thing about my hearing loss observation. We did a quick hearing test on the right side and it did show that I lost some frequency in the low tones. Surprising but then again not so much, because the tinnitus has changed from when I wrote about my mind feeling “unorchestrated” to now a lower consistent tone. I said, “It sounds like a man gargling.” Sometimes things are hard to explain, ;).

We adjusted my hearing aid on the right side to give me more volume. I decided to go ahead and give the Cros the full trial run (keeping it under warranty of 30 days). This means I have time to try it out in different settings and see if it helps. If I think it is not-or in the event I notice more hearing loss in the next few weeks-then I have the option to return it for full refund. I am really wanting this to work, but at the same time, the hearing loss is something I will never regain…so I feel I must be wise in the final decision and give this a good trial run.

It is a strange piece! It is very tiny and there is no ear mold…just this little 3-D triangle microphone that goes in the ear and this little plastic tube that is attached the actual body of the Cros that rests on my ear. I am so used to having ear molds that I panicked when Marcia asked how it was working. I was feeling inside my ear and since I felt no ear mold I thought I had lost it. It will take some getting used to–especially putting it in!!

I can’t honestly say that I think I notice it helping yet as it has only been one day. Last night I didn’t notice changes, but I do want to keep my thoughts open about it and not “assume” the worst that it won’t work. Tomorrow I have a lunch with a friend at Chic Fil A. No time like the present to test it.

And that is the current news…the end of my lab report. 🙂

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Filed under Adjusting to NF2, Family Times, Hospital Trips

The Basics.

Hey guys.

Thought you might be interested in my new items that will help me maintain my independence as much as possible. 😀 I explained them in my last blog post, but I thought pictures would better show how they work as they are even a bit new for me. Why don’t we start as if I get up in the morning. I brush my teeth and take a shower.

The soap dispensers hold my shampoo and conditioner. I am trying to finish the bottles of my old ones. When they are done, I will just use the dispensers. They give me quantities of shampoo as if you were getting soap at the sink. 🙂 I have to squirt it a few times. And the handle at the right is what helps me get in and out of the shower. It was also what my arm was drapped around when the blood clot hit. Very sturdy!

I also use eye drops to help the dry eyes. I put this on the bottle today and came in the kitchen saying, “With the sound of thunder and speed of lightning- Look! In the sky! It’s a bird, it’s a plane, it’s Super-Tears!!!!” Needless to say, I think even Superman would have approved. 🙂 Because I don’t have the finger muscles to push the bottle, the clippers do it for me:

The rest of these things are random for when I need them. Such as when my back has the tense, sharp pain feeling–I heat up the rice jacket. It is flopsy (word?) but very comforting!

I might also need to cut open things in the kitchen, such as the bag in the cereal box or the covers to my tea. I also like to use paper to make special cards. Using real scissors gets difficult. It is not so much closing the blades part as it is having the thumb strength to reopen them. So, we got these new scissors that bounce back for you. All I need to do is practice, because I can’t cut in a straight line anymore. This might also be from not having the grip in the left hand to hold the paper still, but nonetheless, these scissors are great!

I decided that although I do not need this device right now, it is good to practice on. There might be a day when big pens just might not be what I need when writing. So, we found this neat device that makes your hand sturdy. It is hard, because I have always set my pens against my ring finger, and this device does not. Old habits are so hard to die. I hope to practice with it here and there to get used to it. I want to be able to at least do my signature the same with it. 🙂 That is my goal for now.

I have not had to use this YET, but it will probably be used very frequently: say hello to my new gas tank opener. 😀

This will look so much more appropriate than a pair of pliers. 😀 And lastly, what I love the most–to eat. These new silverware are fantastic! The bigger rubber handle allows me to grip the utensil like before but without hurting my hand. I have also noticed they are not ones for proper etiquette. At dinner tonight, the already used knife resting at the top of my plate kept falling off. Hmmm, I have to practice different ways to place them.

Of course the knife looks good resting on the plate in this picture (below), but that is because it was not loaded with gravy. 😉

We made our order from The Wright Stuff. Here is their website if any of you are interested for more information: www.WrightStuff.biz

What do you think? Any favorites? 🙂 I am adjusting well to these and really, they are for the better. I am not the first, nor the last to use resources like these. I am so thankful they are available for my use and independence. Now, if we can just work on the compression stocking part–I think that would just about cover all my problems. 🙂 Night everyone.

More to come…

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Filed under Adjusting to NF2