Something that I have had a really hard time admitting and accepting is that Multiple Sclerosis is a disability. Whenever I have applied for a job, there is always that annoying question “Do have or have you had a disability.” I mean what kind of BS question is that to ask someone? Of course I want to say “NO”, but Multiple Sclerosis is listed as a disability on the darn application and I can’t falsify anything on an application because that could result in me being disqualified for a position I applied for and want. I think this is so invasive and completely ridiculous, but I guess it is what it is in life!
For some strange reason the words disabled and disability shatter my heart into a million pieces and cause me to feel like a useless failure . I do realize how irrational this may sound, but that is how I have been feeling. It made me incredibly sad when I had a difficult time walking through a store last weekend because my legs and feet were experiencing SO much pain and weakness. All
I wanted to do was cry, but I couldn’t because I view that as letting this illness win the never-ending battle we have been in for years and that will NEVER be an option for me!!
I know I already shared with y’all that I figured out I am gluten-intolerant without the expensive tests a doctor would want to run. It seems like a punishment to have to deal with the issues Multiple Sclerosis comes along with and then add gluten-intolerant to the mix seems quite unfair. I know we all deal with random issues and keep on moving forward because we do not have a choice. I am also very aware that many others deal with SO many other struggles that are far worse than what I am, so I am really not complaining. I am going to share more about this gluten-intolerant situation in a later post.
The truth is, because I am always so exhausted during the week after working 8 hours every day of the week, I often don’t have the energy to write as much as I would like to. I end up with so many random thoughts running around like crazy in my mind; it gets so hard to keep track of them all and have those thoughts come together for a good read and one that I am proud of.
For the past week or so, I have been experiencing an increase in the number of horrible dizzy/black-out spells. I have had these issues happen before, but never so many in just one day. At least 2 days last week, there were several moments when the room went completely dark and there NO were sounds at all, which under other circumstances would be great. There was one time I was talking with a co-worker at her desk about work and all of sudden I felt weak, light-headed, hot as hell and dizzy. Luckily I was standing very close to the wall, which kept me standing upright. It might have been pretty embarrassing if I all of sudden fell to the floor at this new job.
I am not really sure which of these issues are more terrifying; dizzy spells, black-out moments or the combination of the two. Of course I would say the combination of dizziness and black-out would the most terrifying because you are dealing two different disturbing issues at the same time. I have dealt with dizzy spells for so many years now, but I have found ways that help me limit the duration of my dizziness, most of the time at least.
Truthfully my experiences with black-out spells aren’t plentiful in comparison to dizziness, but I have enough sense and knowledge to understand how horribly upsetting they can be. I remember a few years ago there was a period of time when I had a several short black-outs throughout the week, but they weren’t anywhere near as severe as they are now. I am not sure if its stress, lack of sleep, weather changes or something else. The list of possible reasons really could go on and on and on, but I really just wish they were STOP!
Thank you so much for stopping by my site today. I will never pressure you to leave a comment, but I do encourage your comments if that makes any sense, but I know your thoughts will be amazing. I promise to respond to your comments as quickly as I can! I hope you are feeling well and enjoying your weekend! Sometimes I think the best part of a weekend isn’t getting out and staying busy, but not having any plans at all so there aren’t any time requirements. My days are set in stone during the week with work, which I tend to strongly dislike, but I guess it is just the life of adulthood. I enjoy spending my 2 very short weekend days living in the moment and not doing anything that might cause unnecessary stress. Please remember that I am always sending y’all LOTS of love
, comfort and many positive vibes!
Always, Alyssa
Reblogged this on Survivors Blog Here.
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I agree with you. It’s not fair to be asked that question, but … For insurance reasons that is why a company has that on most applications. WE Already know we are not OUR Disability, and WE go to great levels to show that is not what defines us. If people without disabilities only knew how hard we with disabilities fight, we’d get a promotion!
(Okay, I’m calm now). LOL! I just woke up from a nap because I was feeling off for a couple days now. I woke up suddenly and downed a huge tumbler of water in less than 30 seconds.
I do hope you had a pleasant couple of days off, and I really hope these dizzy/black-out spells cease soon. That is very scary.
Are you drinking too much coffee? Do you drink enough water? Do you eat during the day? You have to be so very careful.
You have an estimated 55 some-odd days before your insurance kicks in, right?
All my love and support, Sweetie. 😊
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It is a pretty ridiculous question to ask people. You are right, people that live their lives healthy have no idea what a struggle it is to fight through every day!!
I honestly do not and never have drank coffee. I try to drink enough water, but I probably don’t. I have started keeping snacks with me, of course that are gluten-free. At least I am trying though.
What I am about to share about insurance will probably make you as mad as it has made me. Yes, that seems about right with the days, however it is a load of BS! Insurance for just myself every paycheck will be almost 1/2 my paycheck. It is SO insane! The person I interviewed with knew how important insurance was for me and never disclosed how horribly expensive it will be. I am going to continue to work at this terrible company, but only until I find something better, you know where I can afford insurance. I am beside myself with frustration right now and angry I wasn’t ever given the truth!
Thank you for your kindness and support Beckie!
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Oh, Alyssa… I feel so badly for you with this insurance thing.
After all the research I did last year to obtain a great insurance plan, I ended up going with Horizon Blue Cross Blue Shield through my medicare for my part A,B, and C.
I know each state is different, but they were so helpful, and I’m always using it for obvious reasons. My cost per month is under $140.
When searching for insurance, do not go through an insurance broker… They will make your life hell, and your phone will light up like a Christmas tree.
I’ll make a point and go through all the insurance companies I reviewed and give you a list. Just give me a day or so to gather it.
Hang in there , Sweetie!
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Thank you Beckie! I am going to start researching insurance because through my job, it is going to be $600 a month! That is insane!!! No worries, sweetie! If you have time you can give me a list, but if you don’t I don’t want you to put too much stress on yourself. I really do appreciate how much you care and the help you are providing!
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No worries… lease provide me your email address and I’ll provide you with the info I have ontained over the last year.
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You are too kind sweetie! I really appreciate your help! My email address is alyssabowman81@gmail.com
Thank you again!!!
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You’re very welcome! 😊
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I hope you are able to enjoy your weekend and do what makes you happy!
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Thank you, Sweetie! I hope you get a chance to relax and enjoy it yourself!
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You are welcome! I am trying to relax some. I actually didn’t go to work. I had some crazy pain start yesterday while I was at work and it just didn’t get any better. I decided my health was more important than that job and they will be fine without me for a day!
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I’m so sorry you ddin’t feel well today. But, I am happy to hear that you took your health into consideration, because that is what matters most.
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Goodness, it really has been awful! The headache and body aches are brutal. I ended up sleeping on and off yesterday. Thankfully, my boss understands MS because her sister has it. She was understanding on Thursday because that is when my pain started increasing.
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I am so sorry you are going through such agony. Thank goodness, you do have an understanding boss. It does make a difference with co-workers are empathectic to your needs.
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Thank you! My boss is difficult nut to crack. Sometimes she seems easy to get along with and understanding, but other times she seems so uptight and not friendly! I just hope this horrible feeling goes away sooner than later!
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Reblogged this on Antonella Lallo.
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Thank you for reblogging this!!!
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Thank you
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Alyssa, as you know I’m not a physician but I’ve dealt with chronic back pain and the anxiety that comes from pain. Therefore, a couple things as they may help.
1. Dizziness if you’re not lacking food like empty stomach when you’re body is asking for it can come from stress. It definitely is for me even though I eat small meals often enough which is why I rarely get the dizziness. It can also happen with a tremendous amount of stress imposed on your body.
For example, if you’re experiencing pain and/or fatigue (2nd point) ; that’s typically from your body working hard to keep you going through your day. Even sitting for short or long periods can cause fatigue because the body is working extra hard to keep you going. Bodies in chronic pain require meds. Make certain you’re getting the best doses throughout the day. Get up and walk and do child pose and then cobra. Go into a conference room and take care of YOU. Heck, I don’t get disability because that’s how screwed up the system is. However, if you can get even partial disability and work part time, you would still get insurance and, at least, give you something to do part time.
You mentioned the pain in the store. Well sweetie, being strong doesn’t mean to hold your tears back and suffer. Being strong is a person that allows him or her to cry and feel your emotions. Don’t give a fuck about what anyone thinks, they are not living your journey.
I hope some of these things help. As for gluten intolerance, I believe that happens with the necessary enzymes lacking along with stress. How do I know this? When anxiety hits, my stomach sometimes gets bloated and what’s happening is the intestines tighten up because that’s what stress does. If enzymes are lacking, some will call it gluten intolerance. Bottomline, my benzodiazepines are a lifesaver for this as it helps with my stress, anxiety and fatigue. Lorenzapam is the name. You already know I take tramadol for the back pain.
I know I’m given you a lot here, but digest on your time. Hope it helps.
Love, Emma xoxo
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Thank you so much for this incredibly brilliant information! I have honestly gotten much better about feeding myself. I bought of gluten-free snacks so I have something when I get hungry. During the issue with stomach issues I probably did lose weight, but I am trying to gain it back, well some of it.
I honestly think that anxiety gets the best of me. I am trying my best to not stress about things and often just keep my emotions hidden, but it probably isn’t helping at all. Considering one of my doctors refuses to keep my same regimen if I have benzodiazepines, I am anxious way more without them and I agree with you, they can be a lifesaver!
I know I am going to have some questions, but I probably should write them down before trying anymore right now. I am so thankful to have you as a friend and you are so full of great and helpful knowledge. Thank you again Emma!!! xoxox
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You’re welcome dear. Benzodiazepines are definitely life. I couldn’t function without them.
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I totally understand and hate that I am not allowed to take them. It is amazing how much they helped me!
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Hey there! I’m not a doctor, obviously, so take this with a grain of salt; but your dizziness might be withdrawal from gluten. Gluten withdrawal is very real, and I’ve experienced it myself! Are you getting the flashes in your head? I had them when I went off gluten.
Anyway, I wish you were feeling better! I totally admire how you work 40 hours a week, and to me, that is the opposite of disabled. The technical definition of disability (as the government defines it here in America) is the inability to work 40 hours a week, but look at you–you’re doing it! Rock on!!
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Thank you so much Meg! I appreciate your comment and your thoughts! Withdrawal from gluten would make sense, but I have experienced these dizzy/black out spells before which had nothing to do with gluten. I think it could be stress, fatigue, anxiety and or the lighting in the office. I haven’t had any flashes in my head, which I guess that is a good thing!
Thank you so much Meg! I hate the Multiple Sclerosis is listed as a disability because then I feel labeled. There are different seventies of MS and I do not feel mine is there yet. Maybe it is, I don’t really know. I just know all the pain I get when I walk too much is discouraging. I really appreciate your friendship Meg!
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I so wish I could reach out and give you a hug………I understand the thought of being disabled or labeling yourself disabled sucks, big time and i am sorry you understand that feeling too……..now with gluten intolerance, removing gluten from your diet will help you feel better but there will be a detox period and that can be kind of rough. be kind to yourself………you are more than worth it!
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I hate that people think because I have MS I am disabled. I do not like having that question asked on an application because it shouldn’t matter. I am fully capable of doing a job, regardless of this illness.
I have noticed a difference with my stomach since cutting gluten out of my diet. I am just glad I had enough sense to piece it together!
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I agree with you, it is nobody’s business what we have or don’t have and I am sorry you have to deal with that mess.
With gluten, stick with it, it takes a while to get it out of your system!
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That’s exactly what I say all the time. What I deal with is my business and I will share it with people I don’t mind sharing with!
I am shocked on how well I am sticking with the gluten-free foods. It was challenging at first, but I keep finding more foods I like that are gluten-free!
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You can do it Alyssa………don’t give up. Once you eat some you have to start the whole detoxing process all over. So proud of you for sticking with it! 🙂
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Thank you! Honestly, I messed up the gluten-free foods yesterday. Someone I work with brought donuts in and I have a slight weakness for them. I had one donut and minutes afterwards, my stomach let me know it was a bad decision.
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well, don’t beat yourself up…….it happens to all of us. just get back up and do it again tomorrow.
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Thank you for your kindness! I have done some research on things I can take to combat the gluten issues, so we will see what happens!
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I hope you feel better soon!
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Thank you! I am trying to relax this weekend because the past 2 days have been awful!! I hope you have a great weekend!
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I am so very sorry to read this Alyssa. Is it the gluten or other junk you have to deal with?
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Thank you so much. I kind of believe it is other junk I deal with, but I am trying to get better.
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sending lots of love you way……..
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Thank you sweetie! I hope your weekend is going great! Lots of love to you as well!!
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Thank you so very much Alyssa. I am actually on my computer working on another book. I know, crazy, right!? May today bring you a pure sense of calm………..
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You are welcome!! WOW, what is your book about? I want to write a book so bad, but tend to discourage myself from doing so. I keep telling myself and my husband that I am not a good enough writer to write a book. I wish you the best with your book and I would love to read it someday!
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My advice to you is just do it, it has never been easier to publish a book. My first one is already out on Amazon and it is called Frugal Seeds, it’s about saving money. The one I am currently writing is about homeschooling your kids while chronically ill call Lessons From The Wilderness. I have been working on it for over a year and now I am pushing myself to try to finish it by the end of summer.
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That is absolutely amazing Wendi! I did read about publishing with Amazon, but then I got into my own head with it. How did you start with Amazon? Did you just write and then send your book to Amazon? I am beyond impressed with you Wendi!!
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it is too much to write in a response here but i would be more than happy to write it in an email or we could text or chat on the phone……… 🙂
Thank you for your compliments Alyssa, I really appreciate it.
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You are more than welcome! With my crazy work schedule and being on the phone all day, it might be easier to do email, if that is okay with you. I know you are busy, especially writing another book, so no pressure at all! I am so happy for you being successful with writing a book that I know is amazing!!!
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email is just fine with me. when you contact me just put something is all caps in the title. if you don’t hear back from me in two or three days then please resend as i didn’t receive it. 🙂
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You are pretty amazing Wendi! I do appreciate your kindness always! The only problem is, I don’t have your email address. Mine is simple, alyssabowman81@gmail.com
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I will send you an email out asap! 🙂
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Thank you kindly sweetie! I did get your email when I got home and I responded!
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🙂 I will check it out Alyssa, thank you so very much for letting me know.
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No problem at all! I am so honored to have you as a friend sweetie!
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🙂
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As I read your post, I am sending you healing thoughts and much strength. I hope everything will be okay. Sigh…I hate that you are experiencing black outs too…maybe it’s something to mention to the doctor on your next visit. Is it possible that you are too tired? Or is it a side effect of the med you are taking? Keeping my fingers crossed for you, Alyssa. Thank you always for your honesty with the struggles of MS. It cannot be easy….but I know you’ll pull through.
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Thank you so much! I am sure things will get better soon, or at least I hope they do. I did mention the spells in an email to the doctor, but we are 2 hours away from each other and I don’t have insurance right now. There isn’t much they can do about it. I think it’s that I am not getting near enough sleep, but that is something I need to work on. I appreciate your kind words and thoughts!
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Exhaustion and lack of sleep could definitely be the culprit too. Take good care and get well soon.
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I couldn’t agree more! I have to train myself to go to bed earlier because I know exhaustion is probably causing most of the issues!
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HI acceptance is really all we can do. I hate the word disabled, your disabled arnt you i get told…what is it?
You’re disabled under the Equality Act 2010 if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.
Yes sadly I am. I hate it. Always been a hard worker worked since i was 14.
BUT if i am going to be given a label i am going to wear it with pride. I dont allow my disability to discern who I am. I keep going forward as well as I can. Yes I have to use wheelchairs and scooters and sticks but I use them knowing they are my aids in life to move about like people use a car or motorcycle or bus or train, my transport is inside my house stored in my closet or outside charging for its next days journey and adventures.
Dizzy and black out you should have that checked. Is your blood pressure low? I get dizzy with my MS and vertigo too. I have blacked out its called Transient Epileptic Amensia….I go off for seconds or an hour or two make no more memories it is so freaky. But i dont black out per se. I think your black outs should be checked.
Sending you a big hug. xxxx
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I do try not to ever allow MS to label me. I have always worked hard and did well with it. It does get difficult now, but I will keep fighting against it.
I have had these dizzy spells before and they tend to pass. I think it is possible I am not getting enough sleep and I stay a little high-strung. I never knew what black outs were called, so thank you for telling me. Life isn’t for anyone, but we make it work, don’t we!
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I cannot relate to your situation but I imagine it feels crushing to be called disabled, when you are able to do things. Thank you for sharing this today, I would just like to let you know that I am sending you also, lots of positive vibes! ❤
Erin
http://kittyjadeblog.com
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Thank you Erin! It isn’t easy being labeled, but I fight hard and strong against it! I appreciate your kind words!!
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You are very welcome, it is my utmost pleasure.
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You are very kind and I really enjoy reading your comments! I hope your week went well and you have a wonderful weekend!
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You too 😊
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Thank you!
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I hope you don’t have to drive to work, the thoughts of a blackout while driving would be just too scary. I hope you catch up on some rest and feel better soon. Le grà, Marie
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Thank you Marie! The black out spells tend to only happen when I am sitting down, so that is a good thing. I have had dizziness while driving, but I pull over until it passes!
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Those dizzy/black-out spells sounds really frightening–have you seen your doctor? Also, I can’t eat gluten either, but I’ve found some really great substitutes so that I’m at the point where I rarely miss it. I just recently discovered GF donuts that taste almost as good as Krispy Kreme!
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Yes, they are a little frightening, but I have learned how to handle them. My doctor does know about them and I am being forced to see her soon, which is before I will have insurance.
WOW that is great there are donuts that are gluten-free! I am going to have to find them!!!
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I feel for you Alyssa – the pain you must endure and the dizziness is just another factor. No one likes to feel like their world is spinning around and chance that they will fall. My mom had an electrolyte imbalance at one time and suffered bouts of dizziness. She was on a diuretic for swelling in her legs and the switched her to a brand that was not as strong. Also, she had low blood pressure that caused issues as well if she got up too quickly from a sitting or laying position.
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Thank you! Life gets difficult, but it’s important to never give up. The dizziness is almost easy to tolerate because I have dealt with it in the past. The blackouts are another story though.
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The blackouts I would find scary. Do you have a medical button that you wear Alyssa? A good friend of mine had a trip and fall back in November and had a brain bleed. It was a really strange accident. Her nephew came to visit her and he had a puppy. Her dog was excited to see the puppy and ran out in front of my friend and tripped her on the step and she fell and hit her head. She was hospitalized but they said she was okay. Then in March she passed out … she had to have brain surgery. This was an oddball situation, but she got a medical alert button and the old ones you had to push, this one detects if you have a medical issue. Ilene was in the hospital for brain surgery on March 4th – then in the hospital for 2 weeks, then a rehab place until April 10th (she lives alone and is in her late 70s or early 80s, I’m not sure, we worked together years ago and she was funny about telling anyone her age but the doctor didn’t want to send her home alone).
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They definitely can be a little scary, but I think it is possible it comes from lack of sleep. It is either that or I have a massive sensitivity to those lights at my job. I do not have an alert button and don’t think I need anything like that at this time. I am sorry for what your friend went through. I do hope she is much better now!
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The office lights are often harsh too – hpefully you can get caught up with sleep on the weekends if that is the culprit. So many worries for you. My friend says she is doing better now – that is very scary and she had to stay in the hospital step down/rehab place as she lives alone so they could monitor her.
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Yes, the lights are pretty terrible. It is fluorescent lights that always cause issues for me. Even when I am at a store, the lights cause crazy issues. I have done well with resting. I even stayed home from work yesterday because I was feeling awful.
I am so glad your friend is doing better and hope she continues to improve!
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Well, hopefully you feel better today. I thought of you at the store today – buying yogurt and saw the probiotic yogurt and also I was buying Quaker oatmeal (old-fashioned in the canister) and saw a lot of different types of oatmeal in gluten free varieties. I think the manufacturers are catering to more people who follow a gluten-free diet these days.
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I love how you have that picture with the dis crossed out in Disability whcih is why I will be removing the word disability from my page in December. That is exactly what I blogged about last year on International day of People with disability. https://all-hearts.org/2018/12/02/international-day-of-disability/
I experience the same thing even when applying for jobs and even volunteer positions.
You might also want to read this one I wrote about Autism. https://all-hearts.org/2019/04/02/world-autism-day/
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Thank you! I tried emailing you pictures, but for some reason the email didn’t go through. I am not sure why though, I got the email from your site. I might have typed something wrong.
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My bad. It isn’t meant to have a full stop on the end.
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No worries! I will still send you pictures of the blankets, I just don’t know how to do so.
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Alyssa, I love your brave and honest posts. Then all of us who care about you, and your wellbeing can give you the love and support you deserve-just by being you.
It sounds so scary to have the dizziness and blackouts. That would be terrifying!
I have seen that they ask that question on applications now. I have filled out a few of those and had to sit there and decide the same thing. If I don’t put in there that I have a disability then Im lying on the app. It agree that it feels terrible.
Keep being you ~ you are awesome! Get good rest today. ❤️❤️
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Oh my goodness, this comment was so incredibly touching. You actually brought tears to my eyes, but not out of sadness, more of pure joy! Your kindness and support mean SO much to me. There aren’t words that could express how thankful I am for your friendship!
The dizziness and blackouts are not that fun and they can be terrifying. I have dealt with dizzy spells for a really long time and almost know how to react so they don’t last too long. The blackouts are another story though. I am just glad they do not seem to happen when I am driving and hope they never will!
I am always honest on the applications with the “disability” question because I have nothing to hide. I am honest because they will find out at some point. If someone doesn’t want to hire me because of an illness, I don’t want to work for them!
I am trying to take care of myself better. I even called out of work on Friday because of how awful I was feeling. I managed to do pretty much nothing all weekend long and that just wasn’t easy for me, but I did it! I really appreciate your kind comment Alexis and I hope your weekend was great!!
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Much love to you! My weekend was just topped off by having some reflexology for about 45 minutes. Now just hanging out on my deck with a very grounded body and mind. Have a wonderful week my friend! 😊
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It sounds like you are having a pretty nice weekend! I take it the weather is nice where you are, so hanging out on the deck sounds amazing! My goal is to someday have a nice deck added to our house. I want part of it to be screened in with a ceiling fan and the other part to be in the sunshine! Enjoy a little for me please!!!
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Wow, that will be amazing! I’m sending you deck time.
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I think it will be great! I am not sure when it will happen, but it is my goal! Too bad we didn’t live near each other!
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Hi, I’m new to blogging. Reading your post made me feel less lonely. Having Bipolar, had 2 strokes and diagnosed with vascular dementia, made me decide to share some of the good and bad before all dissappear. I don’t know you but lots of love to you as well 😊
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I am so glad reading my post made you feel less lonely. It is so easy to feel lonely when you feel that no one understands. The struggles you have gone through are very real and I am glad you entered the blogging community. People within this fantastic community are always understanding and never judge! I do know about what Bipolar can do to a person and it can make you feel like no one understands. I can’t imagine how terrifying it is being diagnosed with vascular dementia, but I think by starting to blog and write out how you are feeling in the present, will be so helpful for you in the future! Please know I am here for you and if you ever need to vent, let me know! If you would feel more comfortable, you can email me. My email address is alyssabowman81@gmail.com. I will always respond as quickly as I can!! Take care and lots of love to you sweetie!
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I’m still trying to get a suitable name for my blog 😊
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I like how you have it now, but I have a question. What are your goals for your blog? Are you wanting to write about your diagnosis and how you are handling it? It is just important to have the name be kind of leading and your focus, but that is just my opinion. Even though mine started off mainly about living with MS, it veers in other directions as well. You could make a list of names you like and the pros and cons to each. I am more than happy to help with this though! I love writing and coming up with random ideas!
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