[kelly-miller]

I’ll be honest with you, I don’t think it would be particularly helpful to the world in general. I think the only people who would notice there was a disabled person on the floor of the stadium would be other disabled people. There would be a lot of hullabaloo made over the one person who they would choose to represent. They would make a fuss and do all kinds of stories on this person, saying how great they are. I don’t like that kind of attention, and I don’t want my representation to be singled out.

I believe there are just some things that aren’t for us to be at. These athletes have been chosen because they are the elite of the pile. These athletes have met particular prerequisites and been at the top of all competitions Unless there are disabled people who can claim they meet those requirements, I don’t think they should be out there. And I don’t mean under the guidelines of a different scale. I don’t mean where the track has been made shorter or the rules have been altered. These representatives need to have met the exact same skills set or goal line as the able-bodied athletes. That’s the only kind I want standing/sitting out there for me. When we hold ourselves up in the world, I think we should be accountable to the same guidelines.

[kelly-miller]

I also have an overabundance of supplies for the inevitable mess ups by the DMEs. I’ve had to fight often with one of them (Edgepark) over my spc supplies. It’s a headache and I get angry b/c they can be very stupid. But for every time they messed up, my other DME (Coram) does a great job with my feeding tube stuff.

 

[kelly-miller]

I have to say that I don’t think anyone should stop with the dating sites, but they don’t have to be traditional like OKCupid or any of the others. I think everyone on here is worth talking to and has a plethora of things to say to anyone. I’ve been married for 24 1/2 yrs, and I met my husband online back when chat rooms were a big deal. There was no dating or attempting to date, we were all just in there to talk about anything. I wasn’t even looking for a prospective significant other, and yet he happened just like that. I guess I’m trying to say, don’t sell yourselves short when it comes to being the person somebody wants to talk to. Pick something you enjoy, something that interests you, and go be involved. When you’re least expecting it, something will happen. If you are truly happy without a special someone, then that’s okay too.

[kelly-miller]

I don’t know, but I’d like to for on trips. Let me know, Alyssa, when you find out. (You know, you can search in the Facebook groups for the article or post.)

 

[kelly-miller]

The amazing solution of readers to me. I’m going to get my optometrist to prescribe them for me immediately! And the 12-days of Christmas cookies sound good on saltine crackers too!

[kelly-miller]

Absolutely, I want to avoid the hospital too! I don’t have any new, earth-shattering ways I treat colds and flu. I use vitamin c and zinc. I put essential oil blends on my chest with a carrier oil. No matter how much I don’t want to, I make myself go outside to sit in the sun for at least 20 minutes. Cold-Eaze and Theraflu work pretty well.

We all have to be mindful of those illnesses that sneak up on us. One day we’re fine, and the next we’re in bed with fever and congestion crud in our chests. Make sure you have a list of all meds with dosages, and you might want to write out under what circumstances you would or would not consider being put on a vent. Also whether you want what they call Heroic Measures to be taken, meaning crack-your-ribs CPR. It’s good to have all that in writing to help your loved ones deal with the doctors. My husband had fight off the hospice rep 3 times to keep them from putting me in hospice, where they would’ve stopped trying to make me better. As far as the local hospital doctors and nurses were concerned, they didn’t know what to do with a person who had SMA. Arm yourselves!

[kelly-miller]

Well, I’m going to watch it now for sure!

 

[kelly-miller]

One of the things they worry about is blood clots b/c the birth control can cause blood clots. Talk to your Dr about her concerns, don’t just guess, then you can make an informed decision. I will say I was on first the pill, then a brief stint with the Depo shot, and finally switched permanently to the patch. I was on one form or another for 20+ years before I happily marched into menopause. Not once did I ever have any threat of a blood clot. I always figured that if they didn’t get me from sitting in a stationary position for 18 hours a day, then my chances might be pretty good.

There are other things to discuss with your Dr before you decide. If there’s a history of cancer in your family, like breast or ovarian, definitely disclose that info b/c they may want to put you on a low estrogen form. If you are prone to migraines, birth control can cause issues with those. I don’t have any experience with iud’s, as well as the nuvaring or an implant. Without getting into your personal reasons for considering it, there are many options depending on your medical history and preference. There are a lot of potential benefits besides the obvious also. Just do your research as with any meds you put in your body and you should be fine. Good luck! I hope this helped.

[kelly-miller]

I’ve also not been impressed with nutritionists. Unless you get one who specializes in SMA diets, it’s been my experience that they are much like every other field from the medical realm, hit or miss. I gave up on the “professionals” after a couple of different ones just looked at me blankly. But that’s not to say you can’t find one that works for you. Give it a go, just do your research.

[kelly-miller]

I just got a new Quantum Edge 3 with iLevel after having a Permobil for 5 yrs. I had to get the settings changed with a programmer. That isn’t something you get routinely. My wheelchair guy had to make those kind of changes for me. I’m sure there’s a way to get a programmer, but you’d have to go outside of the standard Permobil products. That’s pretty much true with all the main companies.

[kelly-miller]

My RT just told me last week that it’s a small subset of users who need to be concerned about it. He said it’s those who use the machine So-Clean or something similar. I think that machine uses something special to clean tubing from BiPAP and C-PAP machines. In older Trilogies, there’s no filter between the machine and tube to the mask. The tube would be plugged directly into the Trilogy. Whatever the So-Clean does to the tubing when it cleans causes fumes to be emitted straight into the Trilogy b/c there’s no filter between. So only if you haven’t stuck to old fashioned soap and water or vinegar and water, AND you don’t have a filter between the Trilogy and tube that leads to your mask, THEN you need to contact your rep or RT about getting it replaced. You’d think they would’ve put that info out when they announced the recall so we wouldn’t have worried our machines would quit working or blow up or something!

[kelly-miller]

I don’t know the answer, but to me the explanation the girl gave you makes sense. If you’ve lost muscle mass due to atrophy, it would be easier to hit the bone. And let me say if you’ve never had the bone hit, it hurts like crap! I wouldn’t worry about the shot not being effective. I think whether they pushed the needle all the way or part of the way, you’re going to be protected; but if you are really concerned, give whichever of your Drs that you trust the most a call and ask them.

Now I’m curious … did you tell the girl the same spot you always tell people or did you change the spot just for the booster (I assume it was the booster, maybe it was the initial vaccine, I don’t know)? If you changed the spot, I hope you don’t mind me asking, why? Sorry, I tend to ramble when I’ve sat up late watching baseball!

[kelly-miller]

I’ve found that silver works really well. A wound care team used a prescription form once when I was in the hospital. If you don’t want to go that route, there’s Manuka honey. I’ve gotten both from Amazon. Here’s the silver I get, but there are several:

https://www.amazon.com/dp/B07964SRBL?psc=1&ref=ppx_pop_dt_b_product_details

[kelly-miller]

My point about those was that I didn’t just say eenie, meenie, mini, moe to pick which I wanted to do. I read the material you’ve so graciously provided back then. I spoke with Reps from the companies, and I thoughtfully considered the methods of application. All of this was done before I made the decision as to which I wanted to take. Not only that, I periodically reevaluate what I think the drug is doing for me, what it’s not doing for me, and whether I want to continue to put it in my body. You’re correct when you say the three SMA treatments didn’t have very much data in regards to doing trials, and that was something I took into account before I said yes. Nobody hated me or spoke hateful things against me for my decision.

What about the decision we’ve all had to make in our lives here: whether or not to have spinal fusions. Again, it was a personal decision where different things were considered by my parents before we gave the Dr our answer. Things like what were the chances the surgery would be a good thing for me, what would the recovery period look like, how would this affect our family finances. I have never been criticized for the decision we made about this, although people do have differing opinions on it also. We all do research everyday about all sorts of things that affect our lives and the lives of others.

[kelly-miller]

One of the things I’ve always liked about this forum is we’ve been able to express our opinions about anything, especially medical, without fear of repercussion or being attacked for those opinions. Like several of you have already spoken here on this topic, I have strong ideas/opinions/preferences about this. I’m going to try very hard to keep my statements expressed with “I” instead of “you” or “we” so that I only represent myself and not anyone else who I really don’t know what they’ve done or how they truly feel.

It was mentioned earlier in this thread that there had not been heard from anyone who had the vaccine but was now regretting this decision. Well, I am raising my hand now as one of those very people. No, I haven’t had any ill effects from getting the shots, but I got them in the beginning stages of their release to the public, and now I wish I had not b/c of the research I’ve done after the fact. Much like the way I explored the information about Spinraza, Zolgensma, and Evrysdi, I have now put the effort into exploring the shots released to “protect” us from Covid-19.

I don’t feel the need to report the information I’ve learned since it’s all available online to anyone wanting to know it. I won’t insult anyone by questioning the research methods of others, but I will openly accept them as I did those during our discussions of the possibilities of the SMA treatments. I will say that my research has included info from doctors who are just as renowned in their fields as Dr Fauci. They are from institutions just as renowned as well, here and abroad.

What I don’t understand is the anger, and even hatred, that spews out at people who have made a choice about what they want to put in their bodies. I know people who have said to me that I’m endangering them by not getting the booster shot. I disagree with their stance, BUT I respect their right to feel that way and to stay away from me. What happened to respecting the voices from either side of an argument? I’m trying to truly question the authority rather than being a lemming going over the cliff just b/c someone says follow me.

I’ve had so many doctors in my entire life who don’t know how to treat me and my respiratory issues. I’ll give an example that I think a lot of people on this forum can relate to. January 2020, I went to the ER with the symptoms of a fast attacking pneumonia. As soon as we got there, I coded. The doctors decided, after getting me breathing again, to put me in a coma to let me get rest. The doctors told my husband after only 4 days of intubation that I needed a trach b/c it was too long on a vent. They also told him I was having seizures b/c my mouth was twitching (never had a seizure in all my 58 yrs). My husband questioned those Drs and had them send me to Mayo (in Fl). In 5 minutes of observation, Mayo’s neurologist said it was not seizures but over medication. Then they sent me to a short-term rehab for a team of Drs who had a lot of letters behind their MDs b/c they specialized in respiratory care. They proceeded to try to ween me off the vent and remove the trach, but they were using the methods used on people with normal muscle strength in their diaphragms and chests. We tried to explain how to ween me by using a BiPAP. These so-called “authorities” said it wouldn’t work. We contacted one of SMA’s most famous outliers who invented and perfected the BiPAP technique, Dr John Bach. These 5 Drs (I use the term loosely) refused to even talk to Dr Bach! Because of these 5 authoities I couldn’t be weened, my breathing muscles weakened after 4 months of lying in bed on a machine, and now I’ll be on a vent thru a trach for the rest of my life. So much for medical authority.

[kelly-miller]

I’m reading, “The War for Gloria,” about a woman who has just been diagnosed with ALS. I usually stay away from books about disabilities because after all, I already live that life. That’s just my preference, but this fictional story is told from the perspective of Gloria’s 16 yr old son who she raised on her own. He struggles with trying to help his mother come to terms with her diagnosis while dealing with his feelings about his absentee father coming into their lives with his own agenda.

 

I have to admit I’m addicted to purchasing kindle books, but I try to always get them on sale around $1.99 average using BookBub and Kindle deals on Amazon. This was a rare occasion when I paid full price on a new release. The style of writing is different, but if you stick with it, this novel is worth the try.

[kelly-miller]

I just poor it in the syringe and it drains down. It’s just like your gravity only much faster. If you’re worried about speed, I would suggest doing it the way Yvette does with the syringe. She uses the plunger to push it in. That way you have total control over speed and amount. It’s also easier to keep from getting clogged. My syringe for bolus is only 60ml, so it’s that much going in at once. I don’t if I said this before, but I can’t deal with doing it over time, either on a pump or gravity. For some reason, it makes me feel very full, too full. I just do better either by bolus or pushing with the plunger. Liquid Hope, if you haven’t looked it up yet, is totally plant-based which can have some advantages if your stomach doesn’t like meat products. The opposite can be true too. It’s all in what you can tolerate.

[kelly-miller]

I am, thank goodness, finished with all of that! I actually started going thru menopause sometime in my 40s and by 52, no more periods. When I was of such an age, I tried the depo shot that had just come out. Unfortunately, I was in that very small percentage who continued to still have a period. In fact, I got to have mine EVERYDAY for a month before I called a halt to that little experiment. The only other choice of contraception at the time was the pill, besides an IUD (no thank you), so I went back to dealing with “the visitor” every month until they developed the patches. This is where I give a nod to you, DeAnn. You get 3 in a box that you apply 1 to the back of your shoulder or the lower back directly above a butt cheek. My Dr was cool and allowed me to get several boxes at once. If you follow the directions, you stick a new one (small transparent square) on at the beginning of each week. During the 4th week, no sticker, and you get your period; however if you just keep putting them on each week, it actually is more effective than depo at stopping your period. As long as your Dr is willing to prescribe one set after another, you can potentially not have a period anymore.

As far as your question Aimee, I think it depends on what your daughter is comfortable with. I used pads, which can be a little bit of a problem if she moves around, getting out of her chair at school or home. It’s trial and error that would work better on weekends to figure out which brand is her preference. I had trained my body since 1st grade to not need to pee all day until I got home, thus alleviating the need for help or mess out in public. I can say tho, this isn’t recommended by anyone in the med profession, but we all do what we gotta do. When I got older (I started my period at age 12) I tried tampons, but they were uncomfortable as well as dangerous health-wise to wear the 8+ hours until I got home. That’s when I began trying the birth control methods. It’s really going to be like Yvette said. As long as everyone stays calm and remembers it’s another experience in a lifetime of experiences, it will work itself out. Getting to the bone density predicament, I had a Dr too who brought the subject up. He ran a scan, and my numbers were so amazingly low, I had to laugh when the Dr told me! To me, there were so many other things to worry about that I took this one off the list. There are only so many hours in the day. I can say that’s another to weigh the pros and cons against your own body’s behavior and your personal preferences.

[kelly-miller]

Okay, I would be that other community member Yvette was referring too. I’ve been taking RFB now since around 2016 when my stomach just suddenly stopped tolerating the usually nutritionist recommended formula. Let me clarify. Most traditionally trained nutritionists don’t have a clue about the formula needs of someone with SMA. I started taking RFB a couple of years after getting my g-tube, and my stomach turned around from constant nausea and frequent vomiting to feeling normal again. The transition was super easy, and the results were almost instantaneous. I swear by them now, even searching for a DME after we moved to another state. I ended up with Coram as well, and I haven’t had any problems. I just thought about this: I wonder if this switch on your on part might help with your intestinal issues you’ve mentioned since starting Evrysdi. Could be just a coincidence of the drug appearing at the same time as the bathroom troubles. Perhaps it’s your stomach forming a mutiny against your formula!

Yvette has told you a lot of info, so I’ll try not to repeat. I can’t really tell you how much liquid you’ll need to use b/c it depends on the method and which flavor you get. I usually get the salmon entree one and the turkey one. I use water regularly and almond milk occasionally to dilute them. B/c the food is real, the blending is done with foods that are different in viscosity and amounts, and humans are involved in the making, each and every pouch is different in thickness. That means the salmon meal (I’m saying meals b/c they come with the protein, grain, & veggie all pureed together) you open for lunch won’t be the same thickness as the turkey you open for dinner. In fact, even the turkey you open for tonight’s dinner won’t be the same thickness as the turkey you open tomorrow night. I use whatever works for the food in my syringe at the time, whatever works with each pouch.

I do gravity bolus feedings b/c that’s what I’ve always used. I’ve found from my times in the hospital when I was forced to be on a pump that my body does better with the smaller bolus feedings and, although I think I’m fat, apparently my stomach is rather small, so bolus works best for me. I say all this to say RFB is used by all sorts of people with all sorts of equipment. My g-tube is a mic-key, my illustrious co-member has a different setup. I also split my feedings with Liquid Hope thanks to Yvette’s guidance, b/c I wanted some more vitamins and couldn’t stand adding to my ever increasing list of pills, but I didn’t start that until a couple of months ago. You’ve just gotta try all the options to see what’s best for you.

I don’t know what’s made you decide to give RFB a chance, I just know I’m sold on them 100% and would never go back to formulas made by all those companies that pump us full of chemicals, unnatural preservatives, and ingredients we have no idea what they are in the name of making them “healthy.” I can attest to the fact that after switching to RFB, I felt, and still do, better than ever before. I think I gave you a pitch on RFB back in the day, but they weren’t for you at the time. I’m just happy for you to join our ranks! I hope you’ll be as sold on them as we are.

[kelly-miller]

Yes, it’s an actual thing. Last week Biden gave a speech with his plan on mandates. One you might find particularly interesting is that any facility or agency that receives funds from Medicare and/or Medicaid is required to require their employees who take care of patients to not only wear masks but also get vaccinated. There are nurses all over the country who are walking away from jobs and running to other states where the governors are fighting the new mandates and promising to protect anyone’s job for the sake of the right to choose whether or not to get “the jab.” Those same nurses are being offered all kinds of signing bonuses to go work in these states, and it’s almost a given that this is going to end up in the Supreme Court for a decision on whether Biden’s plan is constitutional.

 

Did I keep it politics-free?

[kelly-miller]

DeAnn, I feel like it’s always in your best interest to complete the forms b/c A. it looks good that you’re trying to participate in helping the Claims Rep (CR) to do your info (despite popular opinion, CRs do have hearts and generally remember their clients, especially if they stick out for either good or bad reasons), B. the info in the letter may or may not be all they have, and C. just b/c the yearly income is correct doesn’t mean the monthly income is correct.

What the CR will do is divide your annual income by 12 unless they have each month broken down. The breakdown may help you if there were months you earned less than the SGA limits. The breakdown would definitely assist you if any of the months are in your TWP.

If you need extra time, I would send a quick note to the address on the return envelope. Be sure to keep a copy, date the letter, and put any initials or letters/numbers from the return envelope on to your mailing envelope. Don’t use the return envelope, save that for mailing your forms back. In the note, put that you received the forms 820 & 821, when you got them, when you’re supposed to have them back, and when you think you can return them. Yes, they already know all of that, but really you are protecting yourself by putting everything in your request. Be straight to the point and concise.

All of that said, if you’d still rather let them use what info they already have, then send a letter back in the included return envelope. This time you should explain you want them to use what they have. Again, be succinct and short. Above all else, PUT THE DATE & YOUR SSN on your letters

Remember: They can only use what’s in front of them from either source – you or IRS. For 2021, they won’t have IRS info (it’s not sent until June or later of 2022, depending on when your taxes are completed); so if you can fill in the forms for this yr only, gather all your paystubs from ’21 (originals will be returned, or you can send printouts from your payroll admin), write up an estimate of your net self-employment for ’21, and send it all back. This is probably the best way to go based on what you’ve shared with us.

Sorry I’m writing so much, but I want to make sure I give you all the details you need! Don’t hesitate to get in touch for anything else you have questions about, anytime.

Anyone can reach out with any questions about all things Social Security. If you don’t feel comfortable doing it here on the forum, absolutely email me @ [email protected].

 

[kelly-miller]

The main thing s you have to worry about are Substantial Gainful Activity (SGA) and Trial Work Period (TWP). Let’s start with Twp.

“During a trial work period, a beneficiary receiving Social Security disability benefits may test his or her ability to work and still be considered disabled. We do not consider services performed during the trial work period as showing that the disability has ended until services have been performed in at least 9 months (not necessarily consecutive) in a rolling 60-month period. In 2020, any month in which earnings exceed $910 is considered a month of services for an individual’s trial work period. In 2021, this monthly amount increases to $940.” (https://www.ssa.gov/oact/cola/twp.html)

As it says, you can earn as much as you want (even a million dollars) in that 9-month time and your SSDI check won’t stop. After the 9 are over (remember they don’t have to be consecutive, this helps people who might work seasonally or who may have worked a few months then got sick and went back after a month off), you fall under the SGA rules.

“To be eligible for disability benefits, a person must be unable to engage <b>in substantial gainful activity</b> (SGA). A person who is earning more than a certain monthly amount (net of impairment-related work expenses) is ordinarily considered to be engaging in SGA.” (https://www.ssa.gov/oact/cola/sga.html)

On this, notice where it says impairment-related work expenses or IRWEs. You can use things like PCAs you pay for, special transportation costs, probably even your dog food and vet bills to reduce your gross earnings to be under the limit hopefully.

Here are SGA amounts.
<div class=”iKJnec” role=”heading” aria-level=”3″>For non-blind individuals, the monthly SGA amount for 2021 is $1310.
…
Monthly substantial gainful activity amounts by disability type.</div>
<div class=”webanswers-webanswers_table__webanswers-table”>
<table>
<tbody>
<tr class=”ztXv9″>
<th>Year</th>
<th>Blind</th>
<th>Non-blind</th>
</tr>
<tr>
<td>2018</td>
<td>1,970</td>
<td>1,180</td>
</tr>
<tr>
<td>2019</td>
<td>2,040</td>
<td>1,220</td>
</tr>
<tr>
<td>2020</td>
<td>2,110</td>
<td>1,260</td>
</tr>
<tr>
<td>2021</td>
<td><b>2,190</b></td>
<td><b>1,310</b></td>
</tr>
</tbody>
</table>
I’ve included the 2 major links to get you started. There’s more info if you go to them. Remember, these rules are only for SSIDI. If you get SSI or both there are other guidelines. Let me know if you need those. I was actually a claims rep for SSI but I also did SSDI too when I worked at SSA.

Check the bottoms on the front of each form. There’s form numbers typed in small print that start with SSA- . They have a lot of forms on the website and you can make your own files on the computer so you can make it possible to complete them on there. Let know if you need help. Good luck!

</div>

[kelly-miller]

I’ve never been a big fan of any of the collection of “Pride” months we seem to be overwhelming our calendars with. I feel like it serves as a way to separate the people of our country by pointing out the differences that others do not care to celebrate. The people who usually participate in rallies and awareness events are, for the most part, those who already belong to whichever group is recognized for that particular month. I fail to understand how this brings enlightenment or cohesiveness to our society, but instead opens up competition for groups who don’t have their month yet.

That being said, how do I feel about Disability Pride Month? I still don’t like it even though I’ve now got my 31 days. For those of us who choose to celebrate, demonstrate, and educate about the disability we were born with, we’re going to continue to do these things 24 hours a day, 7 days a week, 365 days per year. It doesn’t, nor should it, turn off when the end of July rolls around. Announcements like the possibility of a new law that would overhaul the SSI benefits system shouldn’t only come one month out of the year, but they should be expected every month in the year! After the 1st of August, society’s attention will be tuned into the next group who celebrates, leaving Bird-Feeding Month, Women’s History Month, Autism Awareness Month, Irish-American Heritage Month, Mustache Month, along with dozens more, behind in the minds of Americans.

Will I celebrate the nuances and complexities of being disabled, more specifically with SMA? Absolutely, as I do throughout the year. I will also hope and pray that our messages of equality, ableism, and success haven’t been watered down in the attempts to be politically correct.

[kelly-miller]

Alyssa, thanks so much for posting this! It’s a spark of hope that’s long overdue.