#syringomyelia awareness month
Text
Monthly Holidays: May
Monthly Beer Holidays
American Mild Month
May Is Mild Month (UK)
Tavern Month
Trappist Month
Monthly Holidays
Asian/Pacific-American heritage Month
Audiobook Appreciation Month
Better Hearing & Speech Month
Better Sleep Month
Breathe Easier Month
Clean Air Month
Creative Beginnings Month
Date Your Mate Month
Ecodriving Month
Family Wellness Month
Freedom Shrine Month
Get Caught Reading Month
Gifts From the Garden Month
Go Mingle Month
Grapefruit Month
International Business Image Improvement Month
International Drum Month
International Victorious Woman Month
Kiwi Month
Lusty Month
National Barbecue Month
National Bike Month
National Hamburger Month
National Hispanic History Month
National Meditation Month
National Military Appreciation Month
National Photo Month
National Potato Month
National Preservation Month
National Salad Month
National Salsa Month
National Smile Month
National Vinegar Month
Older Americans Month
Personal History Month
Revise Your Work Schedule Month
Syringomyelia Awareness Month
Tennis Month
UV Awareness Month
0 notes
Text
Linda Wimmer - phaware® interview 454
New Jersey patient, Linda Wimmer, shares her experience with idiopathic pulmonary arterial hypertension. Linda discusses the various medications and lifestyle changes she has had to make to manage her condition. She also mentions dealing with depression and anxiety, as well as the challenges of accepting help from others.
My name is Linda Wimmer, and I'm from Morris County, New Jersey. I was diagnosed with idiopathic pulmonary arterial hypertension in 2014.
I knew something was wrong years before. It took me about two and a half years, if not longer, to get diagnosed. I found out a lot of other things about my body, but not exactly what my diagnosis was. I found out I had sleep apnea. I found out I had another condition called syringomyelia, which is a cyst in my spine. I found out, too, that I had papilledema, which is increased intracranial pressure in my head. I found out other things, and all these things that were happening, I'm like, oh, that's the cause of my shortness of breath, and it wasn't.
I started with shortness of breath, feeling very, very fatigued. I had chest pressure, swollen legs, pitting edema. I used to exercise a lot, and I felt like the more I was exercising, the less I could do, whereas prior, I could exercise a lot and then do more. Then simple things just became difficult, like climbing the stairs I was out of breath. I would be talking to people, and they'd be like, why are you still out of breath? I'm like, I'm out of breath? I didn't even realize it.
I had worked in healthcare, so I was aware of certain things that were going on, and I had researched a lot of things myself. I was narrowing down my diagnosis on my own, too. I became very, very frustrated, because I felt when I went to the doctor, sometimes, they weren't really listening to me or I didn't feel believed what was going on.
Even after, it was actually on a Christmas Day, I was feeling horrible. The night before, which was Christmas Eve, I was up late trying to get everything ready for Christmas, trying to do everything. My whole family was over. I was trying so hard just to survive. I couldn't breathe. I didn't want to eat. I was so filled with fluid. I couldn't urinate. I couldn't do anything. I just was like, I just have to make it through today. I just have to make it through today. Well, I was getting up to actually go to the living room to open up presents with my family, and I just collapsed and fell on the floor.
I was rushed to the hospital, and the doctor came up to me and said, "Did you ever hear of heart failure?" I'm like, "Yeah, of course I heard of heart failure." Even after that diagnosis, it didn't happen that I found out I had pulmonary hypertension. It wasn't actually at that date, until almost a year later, that I was diagnosed.
I came home from the hospital on oxygen. I had stairs in my house. They told me to put in a chairlift, because stairs were totally my nemesis. From there, I saw a specialist, and it took me a while to get an appointment, probably about three months from the time that I was home from the hospital with oxygen that the specialist did tests and did other things before I started on my first oral meds. Then shortly after that, I was put on another oral med, so two oral meds, and then an inhaler with supplemental oxygen.
I have had a history of depression, but when I hit this diagnosis and what was happening, the depression really didn't come out. It's funny. I always say there's nothing that kicks you out of a depression and feeling like you want to die than the reality that you might die, and that's basically what happened. But then, anxiety kicked in because I wanted to live and I was scared.
One of the problems that I had with pulmonary hypertension is I would have a lot of chest pain. I felt for a while that kind of went untreated. I tried different medicines. I guess they had to find the right cocktails for me in so many ways, but I really felt one of the things that really helped me was I was put on a med just for chronic angina, and that did help a lot, because I was getting such chest pains.
I had to make a lot of different lifestyle changes. I was a very active person prior. I had my own house. I used to rip out my own carpeting, refinish my own furniture, and bring in piles of mulch and do outside stuff. Now just vacuuming the house, I was out of breath. It was hard. How I cope now with it is that I do little things at a time. The thing that is probably the most difficult is I have little patience sometimes with myself. It's like I want to get something done and that's not going to happen as soon as I would like it to happen. I have had to sit down and learn from it and have more patience. I have a lot of patience with people and animals and things like that, but I don't always have patience with myself.
Another thing in my life prior, I was a caregiver, so I'm not really happy or comfortable having people take care of me. I feel sometimes a burden, and that really kind of weighs on me. I don't want to be a burden. I want to be totally independent. I'm very lucky I have a family that is supportive, but then again, they do also have their own lives, and I want to make sure that I don't put too much stress on them. I have very good friends that are supportive, but no one really understands what is going on, I think, as much as another person that has a chronic disease or kind of a similar disease.
One of the things that I found most helpful was the support group. Then early on, I went to a conference, and that was just the best thing ever to meet so many people. They might be far away because the conference is for everybody, wherever, regardless of where they live, and you go and you meet people and you talk to them, and everyone has their own story. But you could also stay in contact with them through Facebook or other ways or texting or whatever. It feels like a big, huge, warm hug. You understand the daily stresses that they have, because you're feeling them, too.
Other things that I had to do in my life that have changed, too, is, of course, the diet of no salt and trying to eat healthier. I really have to admit I could be a better patient. I feel bad sometimes when I go to the doctor. I hate to even let him down sometimes because sometimes I feel like I'm letting myself down. For some reason, I feel worse that I'm letting the doctor down than I even do about myself, which is so messed up, but it's the truth. I don't always put myself first in that way. I'm working on that and working on being a better patient and taking better care of myself and trying to do the things that I know are right. It's just a daily struggle.
Sometimes I eat out of frustration, which is really bad. I stress eat. Whereas before, maybe I would go to the gym, I definitely don't get out as much as I used to to do things. So I feel sometimes the most stuck in that way. That has to do with just feeling fatigued or feeling not so great sometimes.
If anyone has any feelings about whatever is going on with their body and they know something is not right, regardless of what it is, if it's something with breathing or something with their heart or something that they continually go and go and go and go until they find the answer. It's so important, especially with pulmonary hypertension, to get diagnosed because it's a progressive disease. The sooner you start treatment, the slower, hopefully, the progression will be. It will also help you feel better.
But it's so important, because there were times in the beginning I just wanted to give up. Actually, at one point, I said to my family, "If I should die, just make sure you send me and get a really good autopsy," because that's how I felt, like I was going to die and I was not going to know what was going on, but I knew something was so wrong.
For newly diagnosed patients, the best thing I think you could do is join a support group or just even find one other person that has PH or ask your doctor if they could set you up. Definitely get involved in something, because most of the stuff that I have learned or that I really needed to know about has not been from my doctor. It's been from other people who say, "Oh, this is what you have to do," or "this is what you need to do." I cannot tell you how much other patients have brought to the table who talked about their story and talked about their symptoms that you really get to know.
As of right now, I'm doing okay. I'm taking it day by day. I take it day by day. I don't judge it by week to week. I judge it day by day. I wake up every day, and I'm thankful. The more I'm thankful for, the better the day. Sometimes the thing that I'm thankful for is I take a shower and the temperature is right, and I'm like, thank you. That was really good. Or I look outside and the sun is shining my face, thank you. Or you put on a cozy sweater and just like, oh, this is thankful. Or someone calls you and you're like, oh, that was so good.
It's not the big things anymore. I used to always say, "Oh, it's the trip to Florida. It's the trip to Europe. It's this, this, and that." Now it's like the little things I'm so thankful for. Just the little things in life have become so much more important to me. That's what I've learned about myself.
My name is Linda Wimmer, and I am aware that I'm rare.
Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware
Share your story: [email protected]
Listen and View more on the official phaware™ podcast site
0 notes
Text
IT IS SYRINGOMYELIA AWARENESS MONTH APPARENTLY!!! A few facts about the condition for those of you that wanna know:
I do not have Chiari Malformation (which is where the skull is too short to hold the brain so that’s why the syrinx forms) which is the main cause of syringomyelia in both humans and animals. I am in the very rare percentage of an already extremely rare condition.
This is a degenerative/progressive condition that is almost impossible to recover from.
It is caused when there is a fluid filled cyst inside your spinal cord. This pushes nerves out in all directions which causes nerve… it’s not quite damage, but it acts like damage. My nerves translate most forms of heat and warmth as painful, as well as causing extreme bowel and bladder pain that feels like ants in my bowels and a lead balloon in my bladder. It’s very painful.
I have this cyst/syrinx (the term syrinx is the term for a cyst in your spine itself) in the exact same spot that my brother had several tumors, except his were on the outside of his brain stem/spinal cord, and mine inside. This means that his was operable, while mine can only be operable under very specific circumstances. We both see the same neurologist and he is very intrigued about how both our conditions were formed in-womb and legit looked like he wanted to study us when I first met him lol.
The operable conditions are when I have a 100% chance of going paralyzed because the conditions is pushing on the right nerves and they stop reacting entirely. The reason that this is the operable condition to remove the syrinx (which isn’t so much removing it as… popping it… which also means it can grow back…) is because that surgery itself has a 50% chance of paralysis as well. So, 50% chance of keeping from being paralyzed vs a 100% chance of being paralyzed, means that in that case the surgery wins.
I take gabapentin 4 times a day, every six hours, 100mg for every hour of the day. Gabapentin is a nerve medication that peaks in usage around 2-4 hours in, and after 6 hours it starts to leave your system. Which is why I went from 8 hours for 800mg to 6 hours for 600mg. Because the meds always wore off before I could take the next dose and left me in pain again.
Because of my condition I have degenerative muscles. I have a million things to fight here (top of which are a chronic fatigue and allergies that both get me down plus IBS if I eat something wrong oooof) but because of my conditions I can never hold a job outside of the house. I can barely attempt one in the house too. Im working on starting my own work with my preferred craft and my father supports me (in both love and finances but we live together so it’s not hard) because that’s probably gonna be the only way I have my own income in life. I work with fiber, wool mostly, making and using yarn. Mostly making. Mixing the fibers together on expensive equipment that i waited so long to save up for. I have a lot invested in it. It’s one of my special interests too, so it’s really nice to have that as work. Dad is disabled with special interests too, so he gets it.
Because of all of this, I’m actually in a program slightly more… intense, than PT. My town is a college town and in the college (the gym of which is DIRECTLY across the street from my apartment I’m super lucky with that) we have a program called Wellness Elevated. This is where you get a full semester’s access to the gym for the college/public (which is separated from the gym across the building which is for sports kids so there’s no fighting over room it’s smarter) where they give you a personal student trainer in the sports fitness program. These students are training to tailor a routine to each person’s needs. This program got me from low mobility and constant backaches to mid-low mobility. I can function and even leave the house at least half my days now. I’m even hoping to just. Go outside. During this summer. Bring a backpack with emergency meds and stuff and go to the park and stuff.
Sometimes (and I know this is connected cause other people with syringomyelia say this too) I have off days where I drop things CONSTANTLY. Like, there’s this weird ass signal in my brain that keeps opening my nerves or something. It’s strange and none of us know why it happens, but we all agree it’s like our brain isn’t sending the right signals that day. It’s wild. The muscles and such are fine, the hand just keeps opening to drop things.
I’m asexual and consider my libido to sort of be an annoyance more than anything. I am on several pills that destroy sex drive and that shit’s godly. Just wreck it I’m done, I’m bored, I’m over it. My pills are not for those that actively like and want sex. I am on so many pills and every new pill I get further from the norm and I love it. I know others hate it but I’m delighted not to be there anymore.
I also have autism, OCD, anxiety (which I was informed that OCD is an anxiety disorder itself which means that’s a given, and not that anxiety is a biproduct of OCD. Other way around.), ADHD, mysophonia, pica, and a few other scattered issues. I give the therapists my list, and they give me concerned looks.
Um. Idk what else. I have syringomyelia and this is a bit of what it’s like to be me.
17 notes
·
View notes
Photo
It’s Syringomyelia awareness month. It’s not breast cancer, and you can’t buy pretty pink things in support of the cause, but it can be just as deadly and devastating. We are here, trying to live as best as possible day by day, we could really use support and awareness. #syringomyeliaawareness #syringomyelia #syringomyeliawarrior #raredisease #rarediseaseawareness #invisibleillness https://www.instagram.com/p/CdLudy4rFT6/?igshid=NGJjMDIxMWI=
#syringomyeliaawareness#syringomyelia#syringomyeliawarrior#raredisease#rarediseaseawareness#invisibleillness
0 notes
Photo
And here is the prize itself!
So we have the limited collectors’ edition of the Hobbit and Lord of the Rings films on blu-ray and DVD, an exclusive notebook full of artwork from the films, and a map of the Wilderlands signed by Dominic Monaghan and Billy Boyd (aka Merry and Pippin).
It’s all so beautiful and wonderful, and I’m very grateful to Dom and Billy for sending it to me.
So this is going to be raffled, alongside a crowdfunding campaign (most likely on Indiegogo but we’re still in talks about their policies regarding raffles). All money raised is going to go straight to Conquer Chiari, who are super important to me and to anyone whose life has been affected in any way by Chiari or Syringomyelia.
I’m going to be taking this prize on an adventure through Middle Earth over the next month or so, ending in Hobbiton, and will be sharing photos every step of the way on here, and on various other social media platforms - you can find more info out on the Paths That Lead Home website. You can follow this page, the site, or any of my other social media to keep up to date on the crowdfunding campaign and the raffle.
I’ll also be sharing information about chiari throughout the campaign, as awareness ad education are incredibly important.
So please share and feel free to contact me if you have any questions!
14 notes
·
View notes
Text
Monthly Holidays: May
Monthly Beer Holidays
American Mild Month
May Is Mild Month (UK)
Tavern Month
Trappist Month
Monthly Holidays
Asian/Pacific-American heritage Month
Audiobook Appreciation Month
Better Hearing & Speech Month
Better Sleep Month
Breathe Easier Month
Clean Air Month
Creative Beginnings Month
Date Your Mate Month
Ecodriving Month
Family Wellness Month
Freedom Shrine Month
Get Caught Reading Month
Gifts From the Garden Month
Go Mingle Month
Grapefruit Month
International Business Image Improvement Month
International Drum Month
International Victorious Woman Month
Kiwi Month
Lusty Month
National Barbecue Month
National Bike Month
National Hamburger Month
National Hispanic History Month
National Meditation Month
National Military Appreciation Month
National Photo Month
National Potato Month
National Preservation Month
National Salad Month
National Salsa Month
National Smile Month
National Vinegar Month
Older Americans Month
Personal History Month
Revise Your Work Schedule Month
Syringomyelia Awareness Month
Tennis Month
UV Awareness Month
0 notes
Text
Monthly Holidays: May
Monthly Beer Holidays
American Mild Month
May Is Mild Month (UK)
Tavern Month
Trappist Month
Monthly Holidays
Asian/Pacific-American heritage Month
Audiobook Appreciation Month
Better Hearing & Speech Month
Better Sleep Month
Breathe Easier Month
Clean Air Month
Creative Beginnings Month
Date Your Mate Month
Ecodriving Month
Family Wellness Month
Freedom Shrine Month
Get Caught Reading Month
Gifts From the Garden Month
Go Mingle Month
Grapefruit Month
International Business Image Improvement Month
International Drum Month
International Victorious Woman Month
Kiwi Month
Lusty Month
National Barbecue Month
National Bike Month
National Hamburger Month
National Hispanic History Month
National Meditation Month
National Military Appreciation Month
National Photo Month
National Potato Month
National Preservation Month
National Salad Month
National Salsa Month
National Smile Month
National Vinegar Month
Older Americans Month
Personal History Month
Revise Your Work Schedule Month
Syringomyelia Awareness Month
Tennis Month
UV Awareness Month
0 notes
Photo
May is Syringomyelia awareness month. It’s a rare disease so we really don’t get a great deal of support. Please help us get the word out! #syringomyeliaawareness #syringomyeliawarrior #syringomyeliaawarenessmonth #syringomyelia #neuromuscularscoliosis #autonomicdysfunction https://www.instagram.com/p/COii8JpJV9Y/?igshid=psu20ftdrxna
#syringomyeliaawareness#syringomyeliawarrior#syringomyeliaawarenessmonth#syringomyelia#neuromuscularscoliosis#autonomicdysfunction
0 notes
Text
Monthly Holidays: May
Monthly Beer Holidays
American Mild Month
May Is Mild Month (UK)
Tavern Month
Monthly Holidays
Asian/Pacific-American heritage Month
Better Hearing & Speech Month
Better Sleep Month
Breathe Easier Month
Clean Air Month
Creative Beginnings Month
Date Your Mate Month
Ecodriving Month
Family Wellness Month
Freedom Shrine Month
Get Caught Reading Month
Gifts From the Garden Month
Go Mingle Month
Grapefruit Month
International Business Image Improvement Month
International Drum Month
International Victorious Woman Month
Kiwi Month
Lusty Month
National Barbecue Month
National Bike Month
National Hamburger Month
National Hispanic History Month
National Meditation Month
National Military Appreciation Month
National Photo Month
National Potato Month
National Preservation Month
National Salad Month
National Salsa Month
National Smile Month
National Vinegar Month
Older Americans Month
Personal History Month
Revise Your Work Schedule Month
Syringomyelia Awareness Month
Tennis Month
UV Awareness Month
0 notes
Photo
More flowers making their debuts in my yard! These are miniature creeping daisies. The bees and I love them :) Planting and growing is something I do to combat syringomyelia depression. It’s Syringomyelia awareness month still. If you are looking for a foundation to donate to ASAP is a great one! #floweraday #daisy #miniaturedaisies #syringomyeliaawareness #syringomyeliawarrior #donationsappreciated https://www.instagram.com/p/CAGL_ykpd1G/?igshid=kh73d07av4er
0 notes
Text
Monthly Holidays: May
Monthly Beer Holidays
American Mild Month
May Is Mild Month (UK)
Tavern Month
Monthly Holidays
Asian/Pacific-American heritage Month
Better Hearing & Speech Month
Better Sleep Month
Breathe Easier Month
Clean Air Month
Creative Beginnings Month
Date Your Mate Month
Ecodriving Month
Family Wellness Month
Freedom Shrine Month
Get Caught Reading Month
Gifts From the Garden Month
Go Mingle Month
Grapefruit Month
International Business Image Improvement Month
International Drum Month
International Victorious Woman Month
Kiwi Month
Lusty Month
National Barbecue Month
National Bike Month
National Hamburger Month
National Hispanic History Month
National Meditation Month
National Military Appreciation Month
National Photo Month
National Potato Month
National Preservation Month
National Salad Month
National Salsa Month
National Smile Month
National Vinegar Month
Older Americans Month
Personal History Month
Revise Your Work Schedule Month
Syringomyelia Awareness Month
Tennis Month
UV Awareness Month
0 notes
Text
Monthly Holidays: May
Monthly Beer Holidays
American Mild Month
May Is Mild Month (UK)
Tavern Month
Monthly Holidays
Asian/Pacific-American heritage Month
Better Hearing & Speech Month
Better Sleep Month
Breathe Easier Month
Clean Air Month
Creative Beginnings Month
Date Your Mate Month
Ecodriving Month
Family Wellness Month
Freedom Shrine Month
Get Caught Reading Month
Gifts From the Garden Month
Go Mingle Month
Grapefruit Month
International Business Image Improvement Month
International Drum Month
International Victorious Woman Month
Kiwi Month
Lusty Month
National Barbecue Month
National Bike Month
National Hamburger Month
National Hispanic History Month
National Meditation Month
National Military Appreciation Month
National Photo Month
National Potato Month
National Preservation Month
National Salad Month
National Salsa Month
National Smile Month
National Vinegar Month
Older Americans Month
Personal History Month
Revise Your Work Schedule Month
Syringomyelia Awareness Month
Tennis Month
UV Awareness Month
0 notes
Text
Monthly Holidays: May
Monthly Beer Holidays
American Mild Month
May Is Mild Month (UK)
Tavern Month
Monthly Holidays
Asian/Pacific-American heritage Month
Better Hearing & Speech Month
Better Sleep Month
Breathe Easier Month
Clean Air Month
Creative Beginnings Month
Date Your Mate Month
Ecodriving Month
Family Wellness Month
Freedom Shrine Month
Get Caught Reading Month
Gifts From the Garden Month
Go Mingle Month
Grapefruit Month
International Business Image Improvement Month
International Drum Month
International Victorious Woman Month
Kiwi Month
Lusty Month
National Barbecue Month
National Bike Month
National Hamburger Month
National Hispanic History Month
National Meditation Month
National Military Appreciation Month
National Photo Month
National Potato Month
National Preservation Month
National Salad Month
National Salsa Month
National Smile Month
National Vinegar Month
Older Americans Month
Personal History Month
Revise Your Work Schedule Month
Syringomyelia Awareness Month
Tennis Month
UV Awareness Month
0 notes
Last Seen Blogs
krow-bar
Krow
lalabotina
Untitled
ike6189
Lv.32
phantom-provocateur
Don't Like It? Just Plug Your Ears.
a-random-soda
A Random Soda.