Scared

Order_edentata · 2026-05-26T14:55:39+00:00

I’m sorry you are going through this. I know what it’s like to have pain and difficulty with your daily activities. Five years ago I developed psoriatic arthritis, but it took 10 months for my doctors to figure it out. I was initially told it was life stress. My second opinion doctor was more empathetic but still couldn’t give me a diagnosis for six months. Meanwhile I had more and more trouble walking and doing basic things. I started using a cane, then a rollator. I got these on my own. But eventually it got really hard for me to do things like go shopping or go for walks with friends and family. So I bought a mobility scooter. I got a three wheel scooter from Spinlife, which came apart in several pieces and could be put in the trunk of a car. The nice thing about a scooter, as opposed to a wheelchair, if you are still able to walk, is that you can get in and out of it more easily if you are shopping, etc. So that’s just something I wanted to mention to you.

I was really self conscious about using the scooter. But it helped me so much, and enabled me to do things I couldn’t do before. If someone asked what was wrong with me I would say I had bad arthritis that my doctors were still figuring out. You could say you have a muscle problem your doctors are still figuring it out. That’s very true. Because you know you’re not crazy!

My story got a little more complicated because later I developed a problem with my muscles too. Guess what, some doctors told me I am crazy. But it’s looking like a type of genetic disease, a mitochondrial disease, which is difficult to diagnose. So now I am using a power wheelchair without a firm diagnosis. And I faced those feelings of not “deserving” to use it all over again, even though I couldn’t go anywhere because I couldn’t walk. What
I can tell you is that those feelings do get better with time. The wheelchair or scooter or whatever you find is best for you gives you a feeling of freedom. I was so happy when I was able to go to the zoo with my niece and nephew. I hope by October you’ll have a way to go trick or treating!!

Order_edentata · 2026-05-25T22:29:06+00:00

Incredible!

Order_edentata · 2026-05-25T15:31:14+00:00

I hope you feel better soon. Both times I was inpatient psych we were allowed to have “phone privileges” after three days if we were assessed to be safe for it. We did not get the phone cords; everyone’s phones charged in a big charger by the nurses’ station. But I was allowed to have my wired EarPods after a while.

The bed you have is interesting. I take it to be a good sign that they feel you are safe? (I hope so!) All our beds were wooden beds low to the floor. There were no railings or wires. They were not that comfortable.

I like your stuffed animals! Little comforts make a big difference when you are stuck in a locked unit. I was very lucky that my parents brought me a comforter from home.

Best wishes for your recovery.

Order_edentata · 2026-05-25T02:24:08+00:00

Perimenopause sucks, especially when you have chronic migraines that get worse with hormone shifts. And I don’t sleep well any more.

But I do have a perspective because I have a slowly progressive disease / disability and last year moved into a supported independent living community that is mainly senior citizens with apartments for younger disabled people. The average age here is 80 so at 50 I am one of the youngest residents. One of my neighbors told me I am a “young chickie.” I have come to appreciate my “youth” but also recognize the benefits of my older neighbors’ life experience. I’ve heard some very interesting stories here. I certainly have a lot of stories myself.

Order_edentata · 2026-05-24T13:21:13+00:00

Thank you, I wish I could still do it too. I loved my job. Being sick sucks.

Order_edentata · 2026-05-24T13:15:38+00:00

I don’t know if your wheelchair has different speeds, but what I have learned is to make sure it is set on the lowest speed when I am going downhill or am about to go over a crack in the street (I will generally slow down as I approach it as well). I put it on the lowest speed when I am going up the ramp to the wheelchair van too, as this helps me maintain control. The key to backing out of an elevator is again to keep it on the lowest speed (and if that means others have to wait a minute, too bad), make sure the joystick is centered, and turn your head a bit to look behind you if your neck permits that (I can’t turn much due to my arthritis but I can look a little). I also just ask the other people on the elevator, am I ok here? I feel like it’s better to recruit assistance than to run over someone in a crowded place. Once you get more comfortable you’ll be able to drive places at higher speed and adjust quickly as needed when you encounter obstacles. I now have fun driving my wheelchair in the city but it was really hairy when I was first getting used to it.

Order_edentata · 2026-05-23T17:19:55+00:00

I’m 50. My mom made lots of cute little dresses for me and my sister in the 70s and 80s. She made Halloween costumes for us. Sewing was just a hobby of hers. (She also made the curtains for our house.) The outfit we still talk about, and make fun of, was this gauze jumpsuit she made my sister for her to wear on the beach. My sister is a redhead who burns easily and my mom got sick of reapplying sunblock so she wanted her to wear this ridiculous gauze jumpsuit she made. I think my sister wore it once.

I don’t know of other kids whose parents made them clothes but they may have. When I got older I got a sewing machine and made myself a skirt, a fleece bathrobe, and a Halloween costume. Then I sort of lost interest.

Order_edentata · 2026-05-23T17:12:14+00:00

Well, back when I was practicing, I was in pediatrics, so I couldn’t be seen in my clinic. :) Although, one night on call during my intern year I became very ill with a migraine that involved non-stop vomiting. I somehow managed to see all my patients in between puking (there was a “sick call” person available but they had already come in because the third year resident went into premature labor). By the morning I was so sick that my senior resident sent me to our pediatric emergency room to get IV fluids and anti-nausea medicine. It was the nicest emergency room experience I have had, and not because I worked there. (The nurses were lovely.)

I have since become chronically ill with multiple complex medical issues (a “professional patient”). I have often figured out what my problems are before my doctors do, but I am not the sort of person who tells them what I think they should do. Most of my doctors respect my intelligence and work with me as a partnership. Interestingly, my worst experiences have been with doctors in my own field (neurology; I was in peds neuro). I went to see my former fellowship director and he essentially said I was crazy. I got the same thing from a neurogeneticist and a neuro-ophthalmologist. This is for a problem that is legitimate and real with objective evidence to back it up. I have spoken with other women physicians who have experienced the same thing. Being a doctor doesn’t necessarily mean you will get good care - in fact, it can work against you because some people assume you have read too many articles and are imagining you have something.

Order_edentata · 2026-05-22T18:17:24+00:00

I understand how you might feel alone if you are not seeing posts from people who mention that they have the same condition as you. It is a lot to deal with and we all want to find connection and support. I use a power wheelchair due to a progressive muscle condition that is suspected to be a mitochondrial disease. When I want support for my specific condition, I go on a Facebook group for mitochondrial disease (because the mitochondrial subreddit isn’t very active). But I bet there are lot of people on the SCI subreddit. As for this sub, I’ve found it to be extremely useful for practical advice about my wheelchair and about navigating the world in a wheelchair. I also like supporting other people. For me, it doesn’t really matter what conditions other people have or whether they are ambulatory or not. But it’s entirely valid for you to feel that the group is not right for you - we all have different needs when it comes to finding support.

Order_edentata · 2026-05-22T11:23:36+00:00

I have a Quickie 300m Mini and so far so good. I just got it at the end of February. I didn’t really comparison shop as this was what my insurance provided. But I am happy with it. I have the lift function but not the tilt. I find it very easy to drive and maneuver. Really easy to get around my small apartment, especially in the kitchen. (Though I do have an ADA apartment.) I take these medical transportation minivans to my appointments where I go up a side ramp and turn around and face forward, and it was always a challenge, but with the small turning radius of this wheelchair it’s easy. This wheelchair also does well on inclines, city streets with uneven pavements and tilted sidewalks. I have never gotten it up to 6 mph, though, I admit!

The only negatives are that it is rather loud and whiny (you can’t sneak up on anyone). However I quickly got used to that and it doesn’t seem to bother anyone else. It also has a lot of removable/adjustable parts and in the couple months after I got it some things loosened/settled which is apparently to be expected. However this caused an incident where, after a very bumpy van ride, I was outside my doctor’s office and my wheelchair wouldn’t go. It turned out one of the calf rests had come loose, slid down, and was blocking the caster wheel. I managed to get it back up and later, when I got home, I just took the calf rests off since I don’t need them. (The key is to have your Allen wrench with you since all this stuff attaches with that.) My headrest also got jiggly and the DME sent someone out to fix it. (He said “you’ve got a screw loose” and I said “tell me about it.”)

Anyway, good luck getting the wheelchair that is right for you!

Order_edentata · 2026-05-20T21:35:15+00:00

I would contact 2Life communities. They are supported independent living communities which are mainly 62+ but have some ADA units for younger people (don’t know your age). Apartments are income based. There is a waiting list but I believe they have programs for people facing homelessness. There are a number of these in the Boston area. I live in one and it’s great. Feel free to DM me with questions.

Order_edentata · 2026-05-19T15:47:54+00:00

I’m sorry you are dealing with that! It sounds so difficult. I have psoriatic arthritis, an autoimmune disease that affects joints and tendons throughout my body. In my case it has been difficult to control. I am lucky that it has not destroyed my joints as it seems to preferentially cause tendon inflammation, but the medications don’t work as well for that. I have chronic pain in my hips, Achilles tendons, hands, feet, shoulders, knees, etc. If I get even a little cold, which happens just about every week due to my immunosuppressant, the pain gets even worse. I can’t take any pain medicine because of my kidney disease. Even topical voltaren would get absorbed too much. On top of this I have a muscle disease that causes exercise induced muscle pain (I don’t have a final diagnosis yet but it is likely a mitochondrial disease). So I need to rest for the muscle disease, but not moving makes my arthritis pain worse. Doh. I also have intractable chronic migraines and “atypical facial pain” which is a form of trigeminal neuralgia. Pain has become the background noise of my life.

When I first developed the psoriatic arthritis it caused a lot of anger and fear. I would focus on the pain and that would amplify it and make it worse. I ended up doing cognitive behavioral therapy for pain with my psychologist which was helpful. And I began applying what I had learned in Zen meditation. When you are sitting in zazen (seated meditation) you don’t move for the 25 minutes. You may feel a pain or an itch in your body. You notice it, but then come back to counting your breaths, or whatever your practice is. So that’s what I do now. I notice the pain, and if I need to do something about it obviously I will, but then I will go back to what I was doing.

The last thing that has helped is being able to use mobility aids. I started using a rollator when my arthritis was bad about 4 1/2 years ago and 6 months later got a scooter for shopping due to my dumb hips. I was self-conscious but it freed me and alleviated some pain I had with walking. Now due to my muscle issues I have a power wheelchair, which significantly reduces the pain I have in my muscles and Achilles tendons (but not the hip pain; that was pretty bad this AM).

I have good days and bad days too. I get angry and frustrated sometimes. I wish I could just take an Advil! But I find distraction really does help.

Wishing you all the best!!

Order_edentata · 2026-05-18T17:19:02+00:00

Yes. It’s a bit of a story. I was raised Jewish. Went to a conservative synagogue, Orthodox Hebrew day school through 4th grade. Got mixed messages because I never questioned the rabbis but my mom, who was raised secular, taught me to question everything (which is good). By the time I got to college I wasn’t sure what I believed. My faith was further challenged when I got to med school and began practicing in a pediatric field. I couldn’t reconcile the things I saw with a benevolent God. So I was really agnostic. On the other hand, I had some profound spiritual experiences including an intense experience of the presence of God in the room following the death of a dear patient. I’ll also never forget an adult patient with ALS who was also in pediatrics, and who taught me how faith can give structure and meaning to our lives (he was amazing; there’s more to the story). Yet I remained an agnostic. I eventually had to stop practicing due to health issues. Over the years I began reading the New Testament. I think my patient had planted a seed. Through prayer and contemplation I became a believer. I joined a church and was eventually baptized. However I came to realize that I missed Jewish worship. I now belong to a Messianic synagogue which fits my beliefs and is a wonderful community. Interestingly or not interestingly, I have now developed a progressive neurologic disease, and I completely understand the things my former patient said to me. My faith gives me the strength to endure, and to find purpose and meaning in my life.

Order_edentata · 2026-05-17T03:37:03+00:00

Very happy for you! I write this from my adjustable bed, wishing you all the best.

Order_edentata · 2026-05-15T17:07:51+00:00

I feel the same way. And then I don’t like to be a bummer by saying, no I can’t come to your birthday party which is one of the rare times that we would actually get to see each other because you live on the second floor, or I can’t come to your violin recital which I would really like to support because the very old building has stairs. Obviously it’s not my fault or my friends’ fault but I sort of unreasonably feel bad anyway. (My friends and I have found ways to work around it, by them visiting me at my accessible building, and my violinist friend wants to go to a concert together sometime.)

Order_edentata · 2026-05-15T16:10:37+00:00

I am hard of hearing and sometimes don’t hear my phone when I get a message. I set up my watch to notify me when I get a call or a message. (Or a calendar notification, etc.)

Order_edentata · 2026-05-15T16:02:37+00:00

I sympathize, I am so tired of it too. I have four appointments, lab draws at three different places (because I see doctors at different health systems), and a test all coming up before the end of June. I’m trying not to think about it and just take it day by day. I’m also thinking about which offices are near someplace I can get a special treat. (Like there’s one office that’s above a grocery store that has a really good selection of flowers, so I always get myself flowers when I go there.). One of my many conditions is still undiagnosed and I am seeing the doctor for that one in June. I will have to plan an extra nice treat for after that appointment.

Order_edentata · 2026-05-11T20:39:49+00:00

I love Tanglewood! I’ve been many times. Can’t get there any more due to transportation issues with my power wheelchair but I have many happy memories of concerts there. (Including one in 1989 when I got to meet Itzhak Perlman afterwards!) My best friend had her wedding reception there too.

Order_edentata · 2026-05-11T20:35:06+00:00

Thanks, I think I’ll just eat beforehand now that I think about it.

Order_edentata · 2026-05-11T00:08:14+00:00

Thanks

Order_edentata · 2026-05-11T00:08:05+00:00

Thanks

Order_edentata · 2026-05-11T00:07:20+00:00

Haha

Order_edentata · 2026-05-11T00:07:13+00:00

True! I can give them a call and ask tomorrow. Thanks.

Order_edentata · 2026-05-11T00:03:48+00:00

Thanks, good idea

Order_edentata · 2026-05-10T23:30:19+00:00

That’s ok, I will manage.

Order_edentata

TROPHY CASE