Went to the eye doctor today and picked out new frames. Good news is my my prescription has gotten better ( at a part of my body is cooperating with me 😂).
An hour in the gym today! Feeling very tired now but definitely worth it.
hey guys 💕 I guess I’ll do a little introduction post. I’m 22 years old and I live in NYC with my lovely supportive boyfriend & our two cats. I’m diagnosed with multiple chronic illnesses that have turned my entire life upside down. I’m currently only taking online courses and use a wheelchair as a mobility aid because I’m my POTS make it impossible for me to even walk across my apartment without fainting. I’m heading to the Mayo Clinic dysautonomia center in November to get more intensive treatment and stabilized, because there aren’t many specialists in my area. I got sick of bombarding my personal Instagram & finsta with health updates so I made this account to keep it here & also to connect with other chronic warriors! stay tuned for more updates and love to you all❤️
I’m in a mixed state lately. It is what it is. This is more of a vent, I don’t have any inspiring or uplifting message today. I deal with a chronic illness as well and that’s been flaring up and making work and going out feel impossible. Today my joint pain is excruciating and making it hard to sit and do my job, but I already took a sick day yesterday. I feel drained of everything. I’ve been avoiding here because I can normally spin some positive message of strength. I don’t have that to say right now. In a weird way like I would let people done for not being ok in where my recovery is. I have multiple unread messages of people checking on me and I’m sorry I haven’t answered. I’m drained and sick. That’s the ugly harsh reality of invisible illnesses- no one can see that you’re sick and it eats away at you. Financially I can’t just give up and focus on myself mentally, I have to go to work and push on, but lately it just feels impossible. I’m trying to keep my moods stable and keep going but it’s frustrating. It’s times like these I just wish I had a regular brain. #fuckbipolar #invisableillness #mentalhealthawareness #keepgoing
I had a check up appointment with my lovely stoma nurse today! All went well, couldn’t be more pleased with how I’m doing! 🏥🍓⭐️
If you were to look close what would you see, a girl standing waiting for a bus, a smile on her face seeming happy in the early morning or would you see behind the mask, the bags under the eyes, the tired gem in the eye to a mom who pushes herself for her family, between school,work and doctors appointments. To better herself for a better life for her family, no matter what the future holds I'll stand tall and fight for a better life for me and my family. Those who know me know how I am, the extent I'll go to just for my family and those close to me. To those who think they can never better themselves or feel stuck, I've been there many a times behind everything you see the one thing you can't see is everything I fight, my invisible illness, from depression and anxiety to the degeneration of the discs in my lower back and the multiple other health issues, no matter where you are in life never give up, you can make something better for yourself and those you love! 😊😙😘😇💝 #invisableillness #fightforwhatyouwant #tiredmom #hiddenstrength #collegemom #workhardforit #fightforabetterlife
It has been quite a day.
Good news I finished this painting that my brother requested.
Even better news is I am going to the Kelly Clarkson concert in January.
1) insurance is being slow and so IVIG is still not scheduled
2) another person at PT commented on how young I am and I just never quite know what to say
3) the MRI and symptoms list has been sent
4) I don’t know if this is a new part of my life but my feeling like I can’t catch my breath happened 3-4 times today.
I woke up feeling like that but I thought maybe u slept on my back and just sat up and moved around a bit and it went away.
Then I happened a few more times when I was fully wake and sitting up today.
I don’t know what is causing this but again moving my head around and sitting still causes it to go away.
Hopefully tomorrow there are nine of these episodes because they are quite annoying and actually a little bit scary.
I have been able to avoid them when going to sleep because I noticed it happened more often when I was laying flat, I have not found a pattern in the day time ones but then again hopefully it was just a today thing and everything is all good tomorrow.
5) I still don’t know that the headache doctors plan is because my pediatrician didn’t call today and we forgot to call. So tomorrow my mom will call and ask (and maybe let her know about the breathing things that happened today)
👉🏼This is what #mcs
looks like. You can’t see the headache, the burning skin, burning eyes, face pressure, and muscle pain and weakness in this picture. You didn’t see the shallow breaths, the lack of concentration, shakiness, or fear of passing out. 🙏🏼Please take a minute to think of others when your spraying our perfume/ cologne, lighting your candle, or plugin in your air freshener. ... 👉🏼These produce toxins, synthetic chemicals. Chemicals that have no regulation and are made to stick around. These chemicals that bioaccumulate- which means your body had a hard time getting them “out”- the molecules they are made of are not recognized by your body and are seen as poison. ..... 👉🏼Just because you don’t “feel” it doesn’t mean it’s not doing damage. They are endocrine disrupters, cancer causing ingredients, and effect you and your children’s hormones.
And please please don’t think it’s about #stink
it has absolutely nothing to do with that. Don’t be the reason someone is sick for hours or days, can’t work, cant get off the couch or ends up in the ER. .
... #mulitplechemicalsentivity #mcs #thinkdontstink #invisableillness #fakebeingwelltakestalent #godandgrace #canaryinacoalmine #itsnotachoice #thenewsecondhandsmoke
In San Francisco for some appointments, this city is beautiful!
My conversation with my husband this morning. ❤️•
It wasn’t always this way. We have had a lot of issues. His inability to commit fully in the beginning of our relationship and marriage, 3 pregnancies- 2 children, Jobs- loss of work, postpartum for me which led to addiction, tons of lies and distrust, so many hateful words said to each other, tears, him sleeping on the couch, me wanting a divorce and him not caring, and me NEEDING to go to treatment. I would have packed up the kids and left him if he was the addict. Instead he drove me to treatment and came often with the kids and fully participated. He said for better or worse. We still have a long way to go, but at almost four years sober we are falling in love again. He has also been wonderful to have as I figure out how my new MS diagnosis effects me and our family. 🧡
As he reads the chapters for my book that I have been finishing, he feels a bit traumatized again and we have been having those deep conversations about this book being about me, him, our children and how Grace got us through our marriage. It may not reach all readers and some of our family and friends may not like that I had issues with our relationships over the years, but Grace has shown me, and most of us they way back. As Dave and I process the magnitude of our story and whether to publish or not, we grow stronger and stronger and if that is all that comes out of me writing my truth, than it is worth it. Our children have confidence, feel secure and see that we can fight at times in a marriage and still love each other. 🙏🏻🦋🧡 •
#honesty #mswarrior #invisableillness #peace #addiction #sobriety #graceunknown #ms #alcoholic #alcoholism #marriage #forgiveness #god #family #writing #wannabeauthor
When you feel like quitting, remember why you started!
As we say goodbye to the great summer we have had this year, each CFer will be using this phrase, not because of the brilliant HBO show but because of the challenges we face in Winter with #CysticFibrosis
. Here are some great tips from @cftrustuk
>> copy and paste this link in your google search https://www.cysticfibrosis.org.uk/news/christmas-and-cf @cfaware
Got a list of all my headache symptoms together to send with my MRI
Headache (back right of head)
-worsened my sneezing/coughing, barometric pressure and elevation changes -sometimes radiates upward
-never goes away, fluctuates in intensity
Pain with swallowing
-stabbing pain to back of head
-food coming out of nose occasionally
Right arm/hand tingling
Right hand numbness
Burning in right arm and leg
Right leg tingling
Balance problems (dizzy and falls)
Ringing/ static in ears
Can’t lay flat - feels like I can’t catch my breath
Loss of gag reflex
I am not really sure if all these things are directly due to the headache but they are things that started happening with the headache. So for things like nausea I have not found a connection between that and my headache but more with my GI stuff so I didn’t include that in my headache symptoms.
I have been doing some reading on the structures of the brain and it is a bit worrisome that the headache and cyst is on the right side of the head about where the cerebellum are located. And the cerebellum functions ipsilaterally (in like the rest of the brain) and my problems are all on the right side.
I am curious to know if there has been changes to what my scan would look like now, since the scan that we have been looking at is from 2016. It is not because of lack of attempts to get another scan done just I have never been able to finish a scan either because of pain or twitching/moving without knowing it.
The only one (which has actually been finished) that might have looked at that part of my brain was done in the ER and I don’t have a copy of it so I can’t just look to see if there has been a change or what.
I hope that is not bad that I am actually hoping we have found the cause of my numbness and coordination problems and maybe even the headache. I don’t even know why I am kind of hoping this is it because it would not be an easy fix if it can be fixed at all.
But at the same time it is something that can actually be measured as being wrong. For everything else there is no blood test or scan that can be done and said this is It