With Jenn continuing to struggle with balance, stamina, a numb leg, increasing tremors in her right hand and memory issues work was getting more and more challenging. Sneaking into work early so nobody sees her using her cane and staying late until so nobody sees her cane was growing old for her. The employee parking lot was a bit of walk for someone without MS and for Jenn this was turning into a three part walk. Part one: from the car to the lobby...rest. Part two: to the elevator, up to her floor.....rest. Part three: from the elevator bank to her desk.....rest. Even using her cane it was becoming increasingly difficult. Her frustration with this was growing too. When she would get home from work she would tell me about her struggles getting to and from her car.
Then I asked if her work has handicap parking. She said they do. I then asked "what do you think about getting a handicap parking permit and parking there?". Her reply was quick and definitive. She said " no way! Some of my coworkers know what car I drive and they would see it there and start asking questions". She chose to resist this too. She knew it was the logical thing to do but emotionally she was not ready to make this step. I took the liberty of looking up how to get one, where to get it one and how long they are good for. Another piece of advice for caregivers. When your MS fighter is resistant to change even when it makes sense YOU do the homework. Arm yourself with information. I chose not to tell Jenn I was doing it. This will serve you well when the time comes to make that step. It also shows you are there for your fighter and you care about their well being.
Another point of resistance was when we went someplace I would offer to drop her off at the door and park the car. No way, not for Jenn. She wanted to walk with me even if meant she would be exhausted by the time she got to the door. Even though I knew it would be best for her I agreed to her request. As time went on and we zipped by the empty handicap parking spots to park elsewhere she was warming up to getting the parking permit. Then it happened! One rainy, cold Northwest day we parked as close as we could to the store without being in a handicap spot she said "I'm ready to get a handicap permit".
In Washington State to get a handicap parking permit you have to get it from your doctor and Jenn had a neurology appointment coming up shortly. So, at the appointment I asked the doctor for it. Advice: I have been to every single neurology appointment Jenn had. I still go. I do this for a few reasons: one, I am there to support her. Two, her memory isn't the best and I can take mental notes of everything that happens in the appointment. Three, it's comforting to her to have someone there to support her.
Now with the signed paper to get the permit we are off to the DMV. I believe the DMV is some level of hell on earth. Understaffed, cranky employees, long lines and a minimum of 3 kids screaming and crying at the same time. A tidy hour and half later we leave with 2 handicap parking permits. Advice: If you have to obtain a handicap parking permit get 2 (or more) of them. Keep one in your vehicle at all times and the other you can take with you when you travel with other people.
I was interested to see if Jenn would her parking permit right away at work. I was a little surprised that she used it right away. She was still going in early and staying late. That was coming to end. Jenn's game of "hide and seek" with her cane was slipping away from her. As we went into the fall her coworkers where coming in earlier and staying later. She had seen by a few coworkers with her cane. They had no idea what was going on and assumed she had hurt her leg. When they asked if she hurt her leg she would reply "yup" and quickly move along. She didn't want to get into the real reason for the use of her cane.
She was telling me about the coworkers seeing her use her cane. I asked "isn't about time to let your work know about your MS?" and she said "no, it's none of their business what my health is". My response was "true, but if you need to have any accommodations made for you they are going to want to know why". A few more days passed and a few more coworkers spotted her using her cane. Jenn came home one night and said she was ready to tell her work.
The next day Jenn scheduled a private meeting with her manager. In that meeting she informed her about her MS and said that at the next staff meeting she wanted to inform everyone. Smart move on her part. Get it out to everyone at once instead of one by one. The next staff meeting was only a couple days away. At the meeting she makes the big reveal and explains that is why she is currently using a cane. The reaction from her coworkers was supportive and fortunately they didn't ask her a lot of questions. If she didn't want to talk about her MS with me she REALLY didn't want to talk about it with her coworkers.
A few weeks later we had a new visitor to the MS party. Introducing Mr. Vertigo. Yes, that nasty little bastard that makes the room spin like you have a world-class hangover without the alcohol. Jenn has had little bouts with dizziness but that would be for a few minutes or a couple of hours. Mr. Vertigo set up shop for 2 weeks with Jenn. Because she was dizzy all the time her stomach was upset all the time. The only relief from it was when she was sleeping. Otherwise it was laying in bed or on the couch. When I looked at her eyes I could see them "twitching" trying to focus and track things. This 2 week visit from Mr. Vertigo was the longest she has ever had. When she gets it now it's normally a few hours or at the most 2 days.
With everything going on with Jenn's MS it was clear to me what was next. She was going to have to leave work. To this point I have not even suggested it. I took it upon myself to look in to Social Security Disability. I called the S.S. office with a few questions. The representative I was talking to was very nice and helpful. However, she blew me away with one of the last things she said. She said "don't be surprised if you get turned down. Everybody gets turned down the first time they apply". Wow, I get having to screen out the people looking to abuse the system but to turn down everyone is just an awful way to do it. By doing that you penalize the legitimate cases. This put a determination in me to pursue a way to get this done on the first try. I printed out the application and filled out the entire thing other than the dates so when and if needed it was ready to go. Jenn knew nothing of my covert Social Security work.
This ends part two. Part three will a caregivers perspective of part one and two. Since this my first go of doing a blog I am not well versed on building readership. If you have suggestions on how to make it a better reader experience feel free to contact me at info@msfightclub.com. Use the same email address if you have any questions for me or comments.
Thanks for reading,
-Brent
Reject Defeat
Now with the signed paper to get the permit we are off to the DMV. I believe the DMV is some level of hell on earth. Understaffed, cranky employees, long lines and a minimum of 3 kids screaming and crying at the same time. A tidy hour and half later we leave with 2 handicap parking permits. Advice: If you have to obtain a handicap parking permit get 2 (or more) of them. Keep one in your vehicle at all times and the other you can take with you when you travel with other people.
I was interested to see if Jenn would her parking permit right away at work. I was a little surprised that she used it right away. She was still going in early and staying late. That was coming to end. Jenn's game of "hide and seek" with her cane was slipping away from her. As we went into the fall her coworkers where coming in earlier and staying later. She had seen by a few coworkers with her cane. They had no idea what was going on and assumed she had hurt her leg. When they asked if she hurt her leg she would reply "yup" and quickly move along. She didn't want to get into the real reason for the use of her cane.
She was telling me about the coworkers seeing her use her cane. I asked "isn't about time to let your work know about your MS?" and she said "no, it's none of their business what my health is". My response was "true, but if you need to have any accommodations made for you they are going to want to know why". A few more days passed and a few more coworkers spotted her using her cane. Jenn came home one night and said she was ready to tell her work.
The next day Jenn scheduled a private meeting with her manager. In that meeting she informed her about her MS and said that at the next staff meeting she wanted to inform everyone. Smart move on her part. Get it out to everyone at once instead of one by one. The next staff meeting was only a couple days away. At the meeting she makes the big reveal and explains that is why she is currently using a cane. The reaction from her coworkers was supportive and fortunately they didn't ask her a lot of questions. If she didn't want to talk about her MS with me she REALLY didn't want to talk about it with her coworkers.
A few weeks later we had a new visitor to the MS party. Introducing Mr. Vertigo. Yes, that nasty little bastard that makes the room spin like you have a world-class hangover without the alcohol. Jenn has had little bouts with dizziness but that would be for a few minutes or a couple of hours. Mr. Vertigo set up shop for 2 weeks with Jenn. Because she was dizzy all the time her stomach was upset all the time. The only relief from it was when she was sleeping. Otherwise it was laying in bed or on the couch. When I looked at her eyes I could see them "twitching" trying to focus and track things. This 2 week visit from Mr. Vertigo was the longest she has ever had. When she gets it now it's normally a few hours or at the most 2 days.
With everything going on with Jenn's MS it was clear to me what was next. She was going to have to leave work. To this point I have not even suggested it. I took it upon myself to look in to Social Security Disability. I called the S.S. office with a few questions. The representative I was talking to was very nice and helpful. However, she blew me away with one of the last things she said. She said "don't be surprised if you get turned down. Everybody gets turned down the first time they apply". Wow, I get having to screen out the people looking to abuse the system but to turn down everyone is just an awful way to do it. By doing that you penalize the legitimate cases. This put a determination in me to pursue a way to get this done on the first try. I printed out the application and filled out the entire thing other than the dates so when and if needed it was ready to go. Jenn knew nothing of my covert Social Security work.
This ends part two. Part three will a caregivers perspective of part one and two. Since this my first go of doing a blog I am not well versed on building readership. If you have suggestions on how to make it a better reader experience feel free to contact me at info@msfightclub.com. Use the same email address if you have any questions for me or comments.
Thanks for reading,
-Brent
Reject Defeat
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