Moderation

I get worn out easily. It gets hard for me to moderate what I do, though.

I get back pain, from my kyphoscoliosis and arthritis. I get these very scary seizure like, but benign, movements from even unconscious stress. I get sinus issues, pretty bad. Sometimes, I get migraines. 

Hence, I can’t fully live the life I usually plan to. For instance, my church had a “Harvest Night” (in place of Halloween), last night.  I was looking forward to heading and maybe getting some goodies. But I was drained, and I felt God telling me to stay in. 

I was upset, but I did  so. I proceeded to have five episodes of those aforementioned movements. I was frustrated.

However, if I had gone to the event, I would have been even worse.

Hence, it’s a constant learning process. Accepting limitations, and using reasonable moderation, is challenging, for me. Nonetheless, it’s worth learning.

If you can relate, keep up the fight
 

Seasonal Affective Disorder

It’s autumn in New Jersey. I am concerned my bipolar and pain will worsen, with this change.

I am on the right pills to prevent anything. But it’s still a concern.

To those that understand this, I can offer what works for me, when I can’t get out:

1. Reading something escapist.

2. Music

3. Organizing/cleaning, which I hate, but hey, anything to stay stable.

4. Meditation

5. Reaching out to people in need, via phone calls, Facebook, or text. Helping others makes me feel I can be productive.

6. Exercise. You Tube videos help, but it’s best to know your limitations. 

7. Jouranling.

8. Watching an innocent kids movie or a comedy. I like clean things, myself. Helps me feel less anxious. I don’t know why. haha

My Sleep Apnea Journey So Far

I mentioned in a previous post that I was recently diagnosed with sleep apnea, but I want to explore my journey with it so far, and what it’s like coping with it as a blind person.

For about a year, my primary care doctor had been pushing me to get a sleep study done because of symptoms I was having. My memory was deteriorating, and I was more fatigued than my other conditions could account for. I was also having difficulties with my weight. I wanted to get It done, but because of my disabilities, I rely on caregivers to take me to appointments, and they hadn’t been able to do that for various reasons, so I didn’t get the sleep study until June.

Before I could get that sleep study, I had an appointment with a sleep specialist, Dr. Gurski, in April. She assessed my condition and we talked about why I thought I needed a sleep study. She looked at my airway and noticed something that could make it hard for me to breathe when I sleep. What I describe in the next paragraph might not seem related to this, but it is, so please bare with me.

When I was little, my mom was told that my tongue was too large for my mouth. I’ve had some problems because of this all my life, but nothing that needed treating. Other parts of my mouth, like the amount of space between my teeth and cheek, also seem to me to be too small. My wisdom teeth, which don’t seem to have enough room, are constantly cutting my tongue and causing pain. I plan to get them pulled once I have more important health problems under control. I also frequently get food stuckbetween my tongue or teeth and my cheek when I eat and have to reach a finger in and pull it out. I have to be very careful not to bite my tongue or cheek when eating. Finally, it takes concentration to keep my tongue in my mouth, so it sticks out most of the time and I sometimes drool.

When Dr. Gurski had me open my mouth as far as I could and looked in, she couldn’t see my airway. She explained that she should be able to see it, but couldn’t because my tongue is so big, and she thought it might be blocking my airway when I sleep.

We talked about the sleep study and how it could be done either in the sleep lab or at home, but it would be better to do it at the lab if I could handle it so they could monitor me. We decided to try the lab and she set an appointment.

That appointment had to be rescheduled a couple times, but we finally managed to do it on June 17. My mom and stepdad took me to the lab in the evening, where we met with the staff, who explained exactly what would happen. I had a Braille book with me so I could read until I fell asleep, along with drinks since I’m always thirsty and my mouth is always dry, my nighttime medication, and of course my phone and charger. My family left until morning once they knew I was okay. I had purposely done things to wear myself out, so it wasn’t long until I was ready to try and sleep.

Before I slept, they put wires all over me so they could monitor me. I thought I would have trouble sleeping, but I took some melatonin to help, and the bed did something that I think helped. I have a hospital bed at home and am used to raising my head and feet while I sleep. I was afraid the bed at the lab would be flat and that would cause problems, but it adjusted, too. I fell asleep quickly, never even touching my book. They woke me in the morning by talking through an intercom speaker near my bed and told me they had seen some things but wouldn’t discuss exactly what. My family picked me up and we left.

A little over a week later, I got a call. The doctor diagnosed me with moderate sleep apnea. While at the lab, I had 18 events, or times where I had trouble breathing, per hour. Dr. Gurski ordered an APAP, or Automatic Positive Air Pressure machine, for me. This is a little different than the well-known CPAP (Continuous Positive Air Pressure) machine. Both provide air pressure to keep your airway open, but wher the CPAP machine uses pressure at a constant level, the APAP machine uses a range of pressures and automatically changes between them based on your breathing. It took a couple months to get it, though, because of issues with my Medicaid.

I finally got an appointment to get my machine set for September 13 at the company providing it and any supplies I need, AeroCare’s offices. When we got there, they led us to a room with a table and several chairs, and we were told there were a couple other people coming. Once another person showed up and they realized nobody else was coming, we got started. My mom sat by me and helped me with everything since I couldn’t see the guy who worked with us demonstrate things. First, they discussed different mask types. I breathe through my mouth and nose, so I needed a mask that goes over my whole face rather than the kinds they had that only fit over your nose. They had us put the masks on and learn to adjust them. Once we had our masks picked out, they showed us how our machines worked and how to set them up and take them apart. They explained the different settings the machines have and how to change them (more on that in the next paragraph). Finally, they explained to us how often we needed to top up the water chamber, which adds some humidity to the air to keep your mouth from drying out, clean the hose, mask, and water chamber, and how often we would get new supplies, like the cushions that fit on our mask and the filters for the machine. I have to call them every month for certain supplies, and every 3 months for others. Finally, they showed us how the machine, hose, and mask fit into a special case so we could take them home and take them when we travel, and handed us some papers about everything they explained to us that day.

When they showed us the settings on the machine, I noticed a problem. The machine has no speech, and the settings are shown on a screen. There’s a knob for moving between settings and press to select things. The screen will also show how good your mask seal is when you have it on. Since there’s no speech, the settings and other features are completely inaccessible to a blind person like me. There’s an app for the machine, which is very accessible, but it only shows statistics about my sleep and doesn’t let me change the machine settings. If I want to change anything, I have to ask for help. This is really frustrating, and I feel like this shouldn’t be that hard to make accessible.

I’ve had the machine for about a month and have gotten used to it. The mask isn’t as uncomfortable as I expected. I can’t sleep on my side with it since it pulls a little to one side when I try, but I didn’t sleep that way much anymore because of my adjustable bed anyway. At first, I found myself waking up and taking it off in the middle of the night without realizing it, but that’s pretty much stopped. I do seem to be sleeping better with it, and my memory is improving. I like it in a lot of ways, but the inaccessibility really frustrates me.

If you’re blind and use a CPAP or APAP machine, or a similar product, or if you know someone who does, I would love to hear from you or them. Have you or they had problems using it independently? Please contact me if you have.

Who I am

Undefined by my multiple disabilities.

I grew up learning disabled and getting classified education. I also had a visual impairment. In my teens, I developed depression, anxiety, and scoliosis.

I was bullied for all mentioned, and much more. But I am a college graduate, and I did live on my own, for seven years.

I created a Facebook group called “Multiple Disabilities Peer to Peer Support Group”, a few months ago. That is how I met Lanie, the owner of this blog.

I created that Facebook group because with the additional disability of chronic pain that become a huge issue around 14 or so years ago, I felt alone.

It is hard to find a place you belong to, when you have complex circumstances. For example, I need to get out, with my bipolar (my depression and anxiety was redefined as bipolar in 2016). But I can’t work or volunteer the way I want, because of chronic pain issues. With having the visual impairment, I was stigmatized because of my white cane, and denied jobs (they didn’t cite that, but it was obvious). Without it, I would stumble and look drunk, which also caused issues for me, when on job interviews.

I even had to stop volunteering at a nursing home, because my medical issues prevented me from attending much.

I tried an adult medical daycare, but after a few months I need to feel like the 36 year old I am. I finally joined a day program that is focused on therapy for the mentally ill. I am typing this blog at there, now. I am so happy I found this place. It’s okay with them that I need time to go to doctor appointments, need to miss days, and need a comfortable chair, frequently. There’s even an art program here!

I can’t live alone, either. But after seven years of looking, I finally moved into an apartment I share with my landlady and a few others. I have an amazing home health aide I have many hours with.

If you are in the U.S., like me, getting on SSI or SSD is very difficult and takes up to 3 1/2 years. But it’s worth it! I live in poverty, but I am able to get what I need, after nearly at least a decade of research. It is possible in the U.S., to get what you need, with multiple disabilities, if you require the level of assistance I do. You just need to talk to EVERYONE that knows a thing or two, get connected with groups (both online and in person) that help, Google like crazy, get a social worker any way you possibly can, and have patience and hope. I very much look forward to talking to all of you!

Thank You Letter to Caregivers

To my mom, stepdad, and all the caregivers of people with disabilities, thank you for everything you do.

I’ve had lots of rough days with my health lately, and it’s got me thinking about my primary caregiver, my mom, and my stepdad, who also helps with some things, like making sure I have what I need and caring for me when my mom can’t, and how much I appreciate everything they do for me. They see me at my best, when I have the energy to move and do the things I want and need to do, and at my worst, when I’m in extreme pain, dealing with bad brain fog and memory loss, or so fatigued that I can barely move. They see my anxiety, depression, and so much more, and my mom knows how to calm or encourage me when nobody else does. They see more than pretty much anyone else in my life since I live with them, and I often think they know me better than I know myself.

This is a thank you to my mom, stepdad, and anyone else out there caring for a disabled or sick loved one. I probably speak for all of us with caregivers when I say that we appreciate you more than we can say. I try to tell you how much I appreciate and love you, but I don’t think the depth of what I feel comes across very well.

I’m so grateful when you do things like:

  • Helping to calm a bad twitching and jerking episode in my neck and head in the middle of the night
  • Setting up the shower chair and other things I need to take a shower because you know I barely have the energy to get in there and clean myself
  • Making me a meal whenever I don’t feel well, sometimes without me asking
  • Sitting with me and just being there when things are bad
  • Running me to and from the hospital or doctor’s office and coming to see me or bring me things I need or want during a hospital stay at all hours of the day or night
  • Getting me the few things that seem to help me feel better, like the one energy drink brand we’ve found that actually works on me and often helps me get past my fatigue for a little while
  • Or doing a million other things that may seem small to you

During my good days, I’m also grateful when you:

  • Help me celebrate the times when I feel good
  • Put up with my talkativeness when my energy comes back after a bad spell
  • Help me get to church or other activities when I feel up to it
  • Push me to try to make church or other activities when you think I can handle them but I’m just not sure

I know there are lots more things you do during my good days and bad that I’m grateful for, but listing them all is impossible. I love you and appreciate you so much, and I don’t know where I would be or what I would do without you. You’re there during my good and bad times, and that means a lot to me. Again, thank you for everything you do. I may not always thank you, but when I don’t or can’t, just remember how grateful I really am.

Product Review: This pillow might make you more comfortable if you spend much time in bed.

Today I thought I would write a review of a product I recently bought from Amazon. Because of my fibromyalgia, recently diagnosed sleep apnea, and other chronic illnesses, I spend lots of time in bed but also have trouble sleeping and getting comfortable. If you’re in a similar situation, you may find this helpful.
I’ve had a memory foam pillow for a couple years, but it was hard and not in good shape. I got a hospital bed a couple months ago that adjusts. I can lift my head and feet up. I usually lift my feet all the way up, which helps with the frequent swelling I deal with, and elevate my head a little bit, which helps me breathe a little more easily. This position also seems to help with pain in my hips. At one time, I couldn’t sleep on my back like this, and I still sometimes have to curl up on my side, but ever since a few hospital stays where I was forced to sleep that way, I’ve gotten used to it. I sleep with one pillow under my head now, as two lifts my head into an uncomfortable position unless they’re really flat. I couldn’t find a comfortable pillow from what we already had, so I thought maybe it was time to buy a new one.
Buying a pillow online was surprisingly hard. Not being able to feel it or see the picture makes choosing the right one hard. First, if you’re looking for a pillow, I wouldn’t recommend any from the My Pillow brand. The ratings are bad, and I know someone who had ome and said it wasn’t comfortable at all. Also, if you want a good pillow, you’ll probably need to spend at least $80 on it. Some are closer to $150. I had no idea they could be so expensive,. This surprised both me and my mom.
The pillow I finally chose is the Snuggle-Pedic Supreme Plush Ultra-Luxury Hypoallergenic Bamboo Shredded Gel-Infused Memory Foam Pillow Combination with Adjustable Fit & Zipper Removable Kool-Flow Cooling Pillow Cover (Queen) from Amazon. Click here to see the Amazon page for it. I got it on June 7, so I’ve had it for a little over a month. I absolutely love this pillow! Since it’s hypoallergenic, I don’t have to worry about my sensitive skin getting irritated or my year-round allergies getting worse. The description of this pillow is below. I’ll talk more about it after the description.

  • Extra Plush Gel-Infused Shredded Style Combination Memory Foam Pillow That NEVER GOES FLAT! Our Kool-Flow Soft and Luxurious, Extra Breathable Micro-Vented Cover Made In The U.S.A. with 43% Viscose of Bamboo, 56.4 percent Polyester, .6 Percent Lycra KEEPS YOU COOL ALL NIGHT LONG! Fully Machine Washable.
  • MADE IN USA CERTIFIED Bed Manufacturer Using Eco-Friendly Biogreen & Certipur-US Certified Foam. NOTE: PLEASE CHECK “SOLD BY” SELLER NAME, ONLY SNUGGLE-PEDIC PRODUCTS SOLD BY RELIEF-MART, INC. ARE GUARANTEED GENUINE AND WILL BE BACKED BY OUR LEADING 20-YEAR WARRANTY, 120-NIGHT SLEEP TRIAL, AND FREE PERSONAL CUSTOMIZATION IF UNSATISFIED!
  • Zipper Removable Outer Cover To Allow For Easy Adjustment of Thickness and Comfort. Conforming Shape Orthopedically Supports the Neck For Side, Stomach, & Back Sleepers.
  • Hypoallergenic & Dust Mite Resistant. Rolled & Vacuum Sealed For Eco-Friendly Shipping. We use a combination of Biogreen and CertiPUR-US Certified foam tested and shown to be MADE WITHOUT ozone depleters, PBDE flame retardants, mercury, lead and other heavy metals, formaldehyde, without phthalates regulated by the Consumer Product Safety Commission and Low in VOC (Volatile Organic Compound) emissions for indoor air quality (less than 0.5 parts per million).
  • 120-Night, No Hassle REFUND GUARANTEE, FREE CUSTOMIZATIONS and FREE RETURN SHIPPING WHEN YOU CONTACT RELIEF-MART DIRECTLY. INDUSTRY LEADING 20-Year Warranty!

When you get the pillow, it comes with a bag of stuffing. You’ll need to put at least a little bit into the pillow, which opens with a zipper, because it comes rolled up, so there’s very little in it. I put all the stuffing in mine, making it nice and plump but not hard or too firm. The pillow has two zippers you’ll need to open to fill it with the stuffing. There’s an outer case and then a smaller inner one. This is the part that holds the stuffing. I wasn’t sure how much stuffing I wanted to fill mine with at first, so I opened it, put some inside, closed it, shook it to make sure it was free of lumps, and then felt the thickness of it and tested it by laying my head on it to see how it felt. I repeated this until I decided that I wanted to put all the stuffing in it. When you do this, you’ll want to make sure before you close the inner zipper that there is no stuffing near it, as this can get in the way and get caught in the zipper, making it hard to open and possibly breaking it if too much stuffing gets caught. Once this was done, I put the pillow into a pillowcase, and it was set up.
I absolutely love this pillow! It’s very soft and stays cool throughout the night, which is important when you’re heat-sensitive like me. It also never gets flat or lumpy, which is really nice. Because it’s made with shredded foam, it molds to your head when you lay down on it but goes back to normal after use. There’s also no chemical smell like you get with some foam pillows. If you’re looking for a good pillow, I highly recommend this one. You can get it from Amazon for $99.99. I’m not sure why, but the price has gone up since I bought it for $79.99, but in my opinion, it’s well worth the money. Again, you can check it out on its Amazon page. As a bonus, once you buy it, you may get a message from the seller, Relief-Mart, offering free customization and maybe a free organic cotton pillowcase. I almost bought one of their pillowcases for mine, but that would have cost another $30 or so, and I was already spending a lot on the pillow, so I was very pleasantly surprised when they offered to send me one for free.
I hope you find this post helpful, particularly if you deal with health problems like I do. I’m not making any money from this review or the links in the post. They’re just direct links to the Amazon page for the pillow, which I bought for the full price at the time of the purchase. If you have any questions about the pillow or anything I’ve shared, please feel free to contact me or the Amazon seller.

Just Got a New Diagnosis

Today I thought I would talk a little more about my life with multiple disabilities. I just got some news that I’ve been waiting for for a couple weeks and thought I would share it.

For several months, my doctors have been encouraging me to get tested for sleep apnea. This started for a couple reasons. First, I’m considered morbidly obese. I have lots of health problems that make losing weight really hard. Second, my tongue is too large for my mouth. This is something my family and I have known about since I was little. Doctors told my mom that my tongue was too big, and this is something I still struggle with. It’s hard to keep my tongue inside my mouth unless I concentrate on it, and I sometimes drool. I also bite my tongue occasionally since it overlaps my teeth, and my wisdom teeth don’t have enough room, so they regularly cut the sides of my tongue. When my sleep specialist looked in my mouth, she noticed how large my tongue is, and how much it gets in the way. She said she should have been able to see at least a small part of my airway, but she couldn’t. Finally, I’ve been dealing with severe fatigue and memory loss. Some of the fatigue can be explained by my fibromyalgia, but it’s worse than it should be, and that can’t explain the memory loss. When I talked to my primary care doctor and the sleep specialist he referred me to, I learned that the memory loss, constant unrefreshing sleep, fatigue, and other problems can be caused or made worse by sleep apnea. Fibromyalgia may also be linked to sleep apnea.

A couple weeks ago, I finally got the chance to get a sleep study done. They stuck lots of wires and electrodes all over me, but it was less uncomfortable than I expected, and I was able to sleep more easily than I thought I would. When my mom and stepdad picked me up, we were told that I should hear something within 7 to 10 days. This was on the morning of June 18, so I’ve been waiting to hear something for a while and was starting to wonder why it was taking so long since it’s been more than 10 days.

Yesterday, I checked my voicemail. I have to do this regularly because my phone doesn’t always ring when someone calls. I had a message from the sleep center, but it was too late to call them by the time I heard it. I called them back this morning. They had me on hold for a while, but someone who could tell me the results finally answered. I was told that I have moderate sleep apnea, and that at the study, I had had obstructions, or times when my airway was blocked, 18 times per hour, which sounds like a lot.

I’ll be getting an APAP machine soon. It’s similar to a CPAP machine, but wher the air pressure the CPAP machine uses constant air pressure to keep my airway open, an APAp machine adjusts the air pressure automatically throughout the night depending on how I’m breathing. The doctor is ordering the machine through a company that takes my insurance, Medicaid, and I should hear from them any time now. They’re going to bring out a machine and teach me how to use it and let me pick out the right mask type for me.

We’ve suspected that I had sleep apnea for a while now, so getting this diagnosis is kind of a relief. I’m so ready to get the machine and try it. I’m hoping it will help me sleep better and start feeling better. My doctor wants me to use the machine for 31 days and then follow up with her. It’s yet another diagnosis, but I’m okay with that since this is a step toward getting my health under control. I’ll probably do another post after I get the machine and try it out.

Do any of you, my readers, have sleep apnea? How has it effected you? Did getting it treated help you have a better quality of life? Leave your thoughts in the comments.

Welcome to My New Blog on Life with Multiple Disabilities

This blog is meant to go along with the groups for people with multiple disabilities linked on the Groups page. Use the pages to get information about me, the blog, or the groups. If you want to contact me, use the social links in the footer. On this blog, I’ll post news about the groups and the organization I hope to eventually form and any products or other resources I find that might be helpful if you live with multiple disabilities. I would also like to do guest posts where other people with multiple disabilities can share their experiences. If you want an online group on a platform where it doesn’t exist yet, want to offer help with the blog and/or groups, or want to create a guest post or share anything helpful, use the social links in the footer. I hope you find something helpful here.

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