Access to Public Places – We get left out.

Second post on access for people who need mobility assistance. The first post was more about parking and grocery stores or places like Target with access for people who require aid. This post will go over places we go where accessibility isn’t really considered.

Malls: The lack of good accessibility is troublesome for me in particular because the mall by us has an elevator in the 3 department stores and one in the middle of the mall. The elevators in the department stores are usually quite a distance from the main entrance. When I went to the mall a while back with my family they took the escalator while I searched out an elevator because I know that being with me trying to find access is a pain in the ass. Service dogs, walkers, scooters and wheelchairs cannot go up escalators or stairs (well service dogs can take stairs, but I can’t and usually I regret it if I try because I fall a lot). For me, extended periods of walking make my internal temp increase significantly and then I start to lose all feeling in my legs like they’re Jell-O. No matter where I ended up in the mall I had to walk out of my way to find an elevator.

Restaurants: Think about a place you may frequent, do they have wide isles or are the tables very close together with narrow walkways? Most of the places I go for date night have narrow walkways to accommodate more tables which makes walking in with Oak a challenge. For the most part they also have tables where the legs are not easily used for wheelchairs and service dogs. Oak has to go under the table when we eat but if the legs are too close together or have wide bases it’s hard for him to go under so he ends up closer to the isles where people walk. When were went to Ouray in June we ate a restaurant where the seating was on the roof, with no elevator, only stairs. I did it, but my body did not appreciate it one bit.

Amusement parks: I have only been to the one in Denver since being diagnosed and I know from research the bigger places like Universal and Disneyland have more things for people with mobility issues. Over all access is not a problem around the park, it becomes an issue with the rides though. Roller coasters and anything that spins are an issue for me due to my extreme vertigo from my meniere’s disease. You cannot take a service dog on rides so you have someone your with to hold them while it’s your turn so you cannot be on a ride with everyone at the same time, ever. I used a walker when we went because it was so hot that I was pretty sure Oak would be miserable trying to walk on the very hot cement. Heat poses an issue for my MS too, so I have to go with a cooling vest, cooling cloth and a portable fan. There isn’t much in the way of shady spots though so after a couple of hours when those cooling things are no longer cool and you cant have a cooler with you its just a matter of time before the heat takes a serious tole.

For those who are in wheelchairs, if they can transfer themselves or walk short distances it would probably work, but wouldn’t it be amazing if they made a cart on the roller coasters that wheelchairs can lock into? Can you imagine how much better that person would feel not having to depend on someone every time they want to go on a ride?

As a person with mobility issues I can tell you that access sucks. It’s not inclusive for most places, it’s depressing when you feel left out because of something you cannot control. No one chooses to require mobility aids, and we all want to do the same things we could do before or do the things that our friends and family can do.

I challenge you to look at the places you go with a new view of the way it’s laid out. Imagine you are in a wheelchair, would you be able to maneuver around easily or would it take other people to help you?

 

 

Am I Strong Enough?

I have been told by many people that I am strong. Strong in how I keep moving forward in spite of all the bullshit that is thrown at me. Strong because in the face of everything I try to have a sense of humor. Strong because most people couldn’t handle all the shit that I deal with daily.

You know what the secret is? I am not, I am not strong, I do not want to keep having to deal with everything that keeps coming at me. If I could chose, I would say “No THANK YOU!” or “Fuck Off!” but no one is listening. No one is giving me the choice to not be strong.

I get that most people don’t think they could handle it, but you don’t know until it is the only option you have. I think of this frequently when I say something stupid to a mom with twins like “good for you, I couldn’t do that”. They didn’t have a choice either, they have to figure out how to handle multiples.

This last week I am fairly certain I tore my right biceps tendon, but I can’t get into the doctor for 2 weeks. You might think that is a weird thing to be certain about, except I tore my left biceps tendon last year so I know exactly what that dull, throbbing pain feels like. The constant weighted feeling in my shoulder if I use my arm.

Yesterday we took our boys to the mall, my body’s internal temperature regulator does not work, thanks MS. I am walking around the mall with my husband, son and service dog trying to have a good time for the kids. Meanwhile my face is turning red, my husband tells me my face is beading with sweat like I was working out , I start to lose all feeling in my legs (causing a weird limp) and all of my pain was intensified and my brain felt like it was melting. None of this was by choice. I am not a toddler, if I throw myself on the floor and have a tantrum or start crying not only would that embarrass my entire family but someone may call 911.

There have been times when people tell me “God only gives you what you can handle” and to that I say “Bullshit” and this is why I am not strongly religious. What kind of asshole gives a person MS, Meneire’s Disease, PCOS, torn hip cartilage, torn tendons, anxiety, alopecia an all the small things wrong with me and all the worse symptoms of the main issues too.

I am three months late getting my infusion for my MS, first the hospital messed up twice and then we had to wait for insurance. I finally got it approved and today my insurance approval letter says the medication that is given twice in two weeks at 300 mg doses was approved for one time of ONE mg. I am done! I am tired of fighting but I have two children and a husband that need me so I don’t have another choice I have to keep trying to move forward. It’s like climbing a escalator going the opposite direction, it’s hard and exhausting but the only other options aren’t great.

So, sorry for the long ranting of this post, but the message to take from this is you don’t actually have to be strong to look strong to people who don’t know. Mental health is important and this is why I talk to a therapist every two weeks, more frequently if needed. It’s a place where I get to not be strong to the outside world, I feel safe being vulnerable and I don’t have to worry about anyone else during those hours. I don’t have to worry about making my children or husband worried for me. You don’t have to be weak alone, you can find someone to talk to that can help you work through all the unfairness that comes your way. Work through anger, fear, sadness and resentment, oh how my therapist would be proud of me with acknowledging feelings other than anger.

It’s hard, life can be difficult and frustrating. There may be days you cry in the shower so no one knows it’s happening (shhh not me, ok don’t judge me). I do my best to try and give my boys good memories of their childhood, I work through the pain on the days I can and watch movies with them on the days I can’t.

Infertility and Miscarriages – Loss and Grieving

Typically, miscarriages happen within the first 13 weeks of pregnancy (miscarriage is classified as loss within the first 20 weeks) and is a result of failure to implant or chromosomal abnormalities. This results in what most women would assume is a late period. At least 20% of all pregnancies end in miscarriage.

The chances of miscarrying is decreased the futher along in pregnancy you are, once the gestational sac develops there is a 15% chance and once the heartbeat is detected there is still 9.5% chance to miscarry. Age of the mother also impacts the chance of miscarriage, meaning moms that are 30 have an increased risk and it goes up to 78 percent at age 40.

Many factors can lead to a miscarriage, most importantly chromosomal issues with the fetus. As you know from my previous post, hormones are also a factor, smoking, drinking, excessive caffeine must also be taken into consideration. This is why there are recommendations when you are actively trying to conceive to limit the risks of miscarriage.

The symptoms of miscarriage can be found on the internet so I will not go into detail here because it can be a trigger for anyone who has had a miscarriage (for example me, even though I have two healthy boys it still makes me sad).

It is possible to have a missed miscarriage, this does not come with any common symptoms and is caused by the placenta continuing to release hormones and can be diagnosed by the lack of heartbeat during an ultrasound and/or lack of development.

Just like after a pregnancy, a miscarriage causes hormone changes and in addition to the loss of fetus your body has to adjust to hormone changes. If you have been trying to conceive and you miscarry I recommend talking with someone. Personally, I would recommend a therapist but it can be anyone that you can be open with. Since this subject is “taboo” and not discussed it’s important to find someone who will listen and help you to grieve.

Signs of depression after a miscarriage can be fatigue, trouble sleeping, loss of appetite, difficultly concentrating, crying, and self harm. The hormones during pregnancy and loss can make all of these feelings more intense. If you already have depression or anxiety this can increase your chances of depression after a miscarriage.

It is important to remember though, this loss is not just for the mother. If you have been trying to conceive and miscarry the father also feels the loss and it is important that both are able to grieve.

Resources

10 Unbelieveable Missed Miscarriage Statistics

https://datayze.com/miscarriage-chart.php

https://www.verywellfamily.com/making-sense-of-miscarriage-statistics-2371721

Key Facts To Understand And Cope With A Miscarriage

https://www.verywellfamily.com/when-miscarriage-grief-becomes-depression-2371329

After a Miscarriage: Surviving Emotionally