Time for a LONG Overdue Update (on me and the site)

First of all, I apologize for my long absence. I have had a rough few months, but that is really no excuse. I have missed writing and should do it more often. That being said, I am having more and more trouble with my hands, so I will be looking into a speech-to-text format to continue this blog.

Secondly, I have had to stop working and my disability (that I have written about before) is taking longer than expected to go through, so I am no longer able to afford the website (aspotforme.net). I am still doing the blog! Thankfully, wordpress.com is free and wonderful. So, for now, this will be my form of help to the invisibly ill community. I hope to continue on with the website in the future, but with everything else going on, this will do. Many of you also follow me on Facebook/Twitter and know that I have been taking a break from social media for a while, in large part to the information I will share below, but I wanted to take this time to update everyone on how things are with me and explain why the website is down (my gofundme is still available though).

I have finally gotten an official EDS (Ehlers-Danlos Syndrome) diagnosis! This may sound odd to many people. Why would I sound excited about a diagnosis? Because it means that the thing I knew, that I was sure of, is now accepted and understood by doctors as true. It means that they see with their eyes those words and know that I’m not crazy, or a hypochondriac. So, yeah… I’m happy about that.

But I’m not so happy about the fact that my RA has been getting worse, not better with the infusion treatments. They’re going to put me on a different biologic, but before they do they have to use something else to get me through the over three month flare I’ve been going through. It will drastically reduce my immune system, which is already pretty low, so they have to wait until the other biologic is out of my system. So, I wait. And while I wait, I am in terrible pain.

It’s almost funny, I go day to day thinking that I can’t imagine feeling worse than I do, but then the next day comes and I do. I did say almost funny.

So, I’m home a lot now. I get bored, so I play games on my phone, or watch Netflix (I’ve binge watched several shows now). But when I get the opportunity to go out, I am exhausted and even more sore for days after. It’s easy to find comfort in food, when I can eat. Food is not my friend right now. So, I find things that work and binge on those too.

Hopefully this isn’t coming across as super depressing or sad. I usually try to be at least somewhat uplifting. Right now, things are in a valley, but I have been through them before and made it out.

Moral of my story (for today) is this… I am still here. Even though my body is doing everything in its power to get me to give up, I’m still here. I’m fighting for my health, for my kids, and for my sanity (what’s left of it). 🙂

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Putting My Foot Down (is extremely painful).

*Warning- Venting Ahead*

Have you ever said “It can’t possibly get any worse than this.” then it gets worse, like way worse. That is how much pain I’m in. I seriously didn’t think it could get worse, but it can, and has.

Something is going on with my right foot. The top of my foot is in a constant state of flare. I made the image above to show the general pain area and how I feel. Just add an elephant stepping on all those knives, and we’re almost to the right pain level. Thankfully it isn’t in that state ALL the time, but it is anywhere between a 7 and 8 at any given time (10 for really bad flares). When you legitimately consider cutting your foot off, you know there is a problem.

My doctor thought it could have been a hairline fracture, so I had an x-ray… nothing. I’ve got an MRI scheduled, but I have to wait another week and a half since I got a new tattoo recently (apparently that is a big problem). So, for now, I just take very strong pain killers and hope for some relief.

I’ve also bought a “boot” to keep my foot as stable as possible. It helps, as much as anything can. I’m able to walk easier, but I’ve had to use my wheelchair more often than usual. I had to do something, I missed over a week of work and I could not afford to miss any more.

In other news- I got the results back from my genetics test and have an appointment tomorrow to go over them. Over the phone they did tell me that I definitely have the gene associated with EDS, so getting that (official) diagnosis will be a huge step forward for my treatment.

I’m also meeting with a Social Security Disability Attorney to go over my options for filing for disability. I should have done it years ago, but I was just too determined to keep working and not allow my conditions/pain to control my life. Well, I’m to the point where work is a huge trigger for my pain. I’m sure I’ll do a whole post just about the SSDI when I know more about my case.

So, that’s what’s going on in my world right now.

I hope everyone is having a wonderful, pain-free day! (((gentle hugs)))

We may not all be able to march, but we can rally!

As a woman, I participated in the “Day Without a Woman” yesterday (March 8th). I wore red, I took off work, I didn’t go shopping, and I went to lunch at a female owned small business (Mexican). These are things I’m physically capable of doing. I also plan on attending the March for Science in my home state (with the assistance of a friend). But it makes me think… what about us?

Disability Rights have finally started inching its way in to the conversation (about time). My hope is that this trend will continue, and grow in “popularity”.

I hate the word “popular”, because it sounds like civil rights are just cliques that fight for attention. But in reality, civil rights should unite us! They give us a common goal, a focus for change. We are humans that just want to live. That is all, we want to be free to live.

Disabled citizens are especially worried about that freedom.

Parents of children with disabilities are worried for their kid’s future, and rightly so. With the new voucher system, students with disabilities are being pushed aside and will suffer from lack of funding. Even healthy kids are in danger of losing specialty classes that are vital to a well-rounded education. We have a Education Secretary that knows nothing about public schools, and their benefits. But this is not about a single person, this is a much bigger problem, and has to be addressed.

For people like me that rely on insurance on a daily basis, I cannot begin to express my fear for the future. No, the ACA was not perfect. But our new healthcare plan is riddled with flaws! It only benefits people that don’t need treatment on a regular basis. Annual check-ups, the random flu/cold, these are things easily covered. But when you go to the doctor (or multiple different doctors), you might as well forget about saving for anything.

So, what can we do? Form a rally or march of our own? I know I wouldn’t be able to fly out to Washington and march (well, roll) up to the capitol building with a list of grievances. But I think there is something we can do.

If everyone with a disability (of any kind), said “We’re tired of being treated like a burden, we’re tired of Ableism” and spent one whole day doing something to get their attention. It could be sending pictures to our local politicians, it could be wearing the color of our individual condition, or some other form of solidarity.

For those of us that still work, it can be difficult to take a day off (especially for something like this), because we end up using our sick days up pretty quick. But if you tend to hide your disability, this would be the day to make it known. Because of HIIPA, we are under no obligation to do this. So, it could make a big impact. Take video of your “coming out” and post it on-line. People need to start paying attention to the contributions of people with disabilities! We’re not a burden to society, we are society!

July is Disability Pride Month and July 12th is Disability Awareness Day, so I feel this would be the perfect day to rally. If anyone has suggestions on how to make this successful, please comment below! I really hope this gains support. Ableism has become the norm, we need to make a statement that says very clearly “We’re here, and we’re not backing down”.

I’ve made a Facebook page specifically for the July 12th, Disabilities Day.  I hope you take the time to comment or message me with suggestions (note- hate speech will be deleted). Thank you!

Trying to Wrap My Head Around This

I’m losing my hair.

Auto-Immune Disease SUCKS!

I really could just stop this post right there, but I have SO much more to say. I don’t have all the answers, I probably have more questions than anything else. So, I’m just going to lay it all out and let you guys ponder the results.

Is wearing a wig being “fake”?

This is a loaded question, I get that. It immediately makes people uncomfortable, heck it makes me cringe just asking it. But I really feel like it’s a valid feeling those of us with lair loss have and it needs to be discussed. Because, let’s face it, (as women) we tend to put a lot of stock in our looks. We love to feel pretty, and our hair is often a big part of that. When we actually wash, dry, and style our hair it is cause for celebration and glamour shot style selfies. So, when that hair starts to come out in clumps, it can be extremely disheartening.

What’s the answer? Do we cut it super short and hope that will help?

Personally, I have been steadily cutting my hair shorter and shorter for the last two years. I used to have super long (gorgeous) hair! I could have done a shampoo commercial, it was by far my best feature. So, when it started coming out in huge handfuls, I knew my illness had finally won. One night my brush got stuck in my hair and when I pulled, every hair was coming with it. So I cut it out… then the rest of it. I cut all my beautiful hair off because of a brush. Then I went to my stylist in tears. She fixed my ridged cuts and then we decided to add on a fun color, to make up for my loss. I’ve enjoyed playing with that since then, but now (with the rate my hair is coming out) I can no longer use the harsher colors. I’ve got to go natural, or super gentle. I am all the way up to a pixie cut and I really don’t like it, but I’ve found my hair falls out less with it this short. Nevertheless it is falling out and I am trying to figure out what I’m going to do when it is too thin to be comfortable.

Back to my main point. I am a very “proud” person. By that I mean, I couldn’t care less what people think of me. I’m over-weight, I know it. But if someone else has a problem with it, that is their problem, not mine. So in my head, I know I should just embrace my hair loss and go with the “body positive” approach. On the other-hand… I can’t even imagine doing that. I love my hair (my old hair) and I miss feeling pretty. I can’t wear make-up because of my allergies, so a cute outfit and interesting hair style just made everything better. (note- I am not a “girly-girl”, like at all, but who doesn’t want to feel pretty every once in a while) So, I’ve started looking in to wigs.

I have a friend that is currently transitioning to non-binary. They are so beautiful, inside and out. But they still deal with a similar issue, are wigs necessary to feeling good about your appearance? My friend said when they’re feeling more feminine, a wig can be very empowering. But they don’t feel the need for it on the more masculine days. I asked what type of wigs they typically wear, whether they’re similar to their normal hair, or totally different. They said that most of their wigs are completely different, and it’s good to have a variety based on the situation. I found this very helpful and thought others would be interested as well.

Ok, back on track. The question for me is similar to what I had asked my friend. Do I go for something closer to my own hair (and make it look totally natural)? Or do I embrace the full “wig-life” and have fun with it? Do I get long, colorful, interesting wigs? Should I have several styles on hand? I know that I have time to figure this out, but it has been on my mind and I know there are other people out there that are in a similar boat.

I decided to ask some people on Facebook (in closed groups) about this subject and I got some good insights.

I think all my life I found my hair was the most attractive thing about me. I had thick, luscious, dark brown, straight Asian hair. I now have curly dried out fried hair that falls out so much I want to shave it off. I don’t think I am a wig person. I think I would rather be a scarf lady. So many beautiful scarfs out there. Already starting a collection.”

“My hair is coming out in clumps, but I still have long hair. I think the next time I go in to see my hair stylist, he will recommend taking some off so it doesn’t look so stringy. I would love to say I’d shave it off and proudly go bald if it got to that point, but so much of my identity and femininity is in my hair – just my own opinion. So I think I’d try a wig before shaving it all off.”

“Hair loss can feel devastating. I really panicked last year, as I’m already genetically thin in the hair dept, and I was losing hair – hand over fist. My Endocrinologist said that the sickness,… but especially stress will cause the follicles to stop producing, then in time hair will begin to grow again. But, It’s hard to know, when conditions are so chronic. So, I’ve pondered this myself. I’m not there yet, but I think in my case I would gravitate more to soft hats, rather than wigs for most days or occasions, if my hair loss continues to the point of no return. But yes, I think I would also try a wig, and I do believe it would help me feel better about my appearance. I do occasionally wear hats to hide how thin I am on top, and I changed the color of my hair recently for the very reason of trying to feel better about myself.”

These are just a few of the responses, I didn’t want to put anything that had personal information on here. Over-all the results were torn, which is how I feel as well.

I think what it boils down to for me is this…

Losing hair due to illness is not fun, so we should do whatever makes us feel good about ourselves. If that means wearing a wig that looks exactly like how our hair used to be, go for it! If it means wearing a wig that is completely different and looks like a unicorn threw up a rainbow, go for it! If it means shaving your head, go for it! Our illness has already taken so much from us, don’t let it take your femininity! You are beautiful!!!!

 

Changes, Challenges, and Resolutions.

It is finally a new year and that means New Year’s Resolutions. But for some people (a lot of people) they are extremely difficult. This is so much more than the typical “lose weight” or “save money”. For people with chronic illness, a new year can mean a whole new year of challenges. Our resolutions often combine the typical with our own brand of unique pleas for a better life.

For those of us with “moderate” pain (I am in NO way making light of any level of pain), a resolution may be simply to work out more so our symptoms don’t get worse. For others of us with more progressed symptoms, we may resolve to look for alternative options that allow us to keep moving with as little pain as possible. But even those things just scratch the surface of our wish lists for the new year.

I know for myself, something has to actually change! I’ve been doing my resolutions a little differently the last few years and (even though my physical body hasn’t agreed with my choices) it’s been a big improvement over the typical set of lists people make. I look at the things in my life that I need to change or adjust and I write down what those things are, then look for consistencies in the list. What is it that I really need out of my year? Last year I noticed that I wanted to eat less, spend less, and so on. So I focused on it being the year of “LESS” in my life. For the most part I did… ok with it. I could have done WAY better, but I won’t get down on myself (that’s not how this works). This year when I really thought about my needs, I saw another very interesting pattern.

This year I need “MORE”. I want to be more active in my kids lives, write more on my blog, make more money, be more available, etc. So, I am letting it be known that I am stating my resolution for all to hear, and that I am going to do more this year. More for myself, more for my family, and more for my community.

I encourage everyone to find that one thing that you need this year. Maybe it’s wisdom. In life, work, with your doctor, etc. Maybe it’s strength, or care, or faith. There are so many possibilities! If you need some more examples and have questions about the origins of the My One Word resolution, check out the website myoneword.org. It has helped me a lot!

Now, in the spirit of sticking to my new year’s word… (I usually HATE doing this)… I’m going to put my gofundme page back up. I’m trying to be more upfront and honest, I can’t do this on my own, I need help. Ignore if you like, I’m just trying to practice what I preach. https://www.gofundme.com/2htvauy4 Thank you!

It’s Been A While… and I’m Struggling

I haven’t written anything in about a month, because I’ve struggled to find my words. I’m still having a hard time, so please hang in there with me and I will do my best.

The day before Thanksgiving I got a letter from my insurance telling me that my electric wheelchair had been declined. This was a huge blow to my progress and to my emotional well-being. I’d been going back and forth with my doctors office and the supply company trying to get that chair before the end of the year (out-of-pocket met). To get a denial after months of waiting, was a kick in the gut. So, now I have to appeal and start the whole process all over. I know that it is very typical, and I’m not alone, but it’s still devastating.

I also started my IV infusion treatments for the Rheumatoid Arthritis. Some things about it were expected, others were not. I knew I would be tired and sore, but I was still unprepared for just how tired and sore. I was told it would take five hours, when it actually took seven. I did not know I would have to have my blood pressure taken every half-hour, which is one of the most painful things ever for me. I left there with a huge bruise on my right arm and unable to even lift my left. I was grateful there were kind people there that are good at their jobs. They took good care of me, and understood when I had to get up to go to the restroom about ten times over the course of seven hours. I was pleasantly pleased to have a large screen TV and Netflix that kept my focus away from the pain in my back from the uncomfortable chair. Four full-length movies later, I was done and my husband took me home to rest. I was unable to sleep due to the pain, even though my whole body cried out for it. For days my arms hung at my side like bricks, I had to take off work and could barely lift a glass to drink water. I’m also starting to lose my hair. I knew this was a possibility. Its been a while since I’ve dealt with major hair loss, it’s one of the reasons I’ve had to chop my hair off (I used to have very long, gorgeous hair, now it’s a pixie cut). My last shower, the tub was covered in hair, not encouraging.

I’m still hopeful these treatments will relieve some of my pain, I just wish the process weren’t so destructive. I have another treatment in a few days and I am (obviously) not looking forward to it. The worst part is that it will be the day before Christmas Eve. Which means (based on the experience from a last time), I will be very little good to anyone over Christmas this year.

I have a tradition every Christmas (every since my first was born 14 years ago), to stay up and wrap gifts while watching A Christmas Story on Christmas Eve. Then arrange the gifts under the tree for the next morning. Over the years it has taken me longer and longer to complete this task, as my pain has gotten worse. But it’s something I enjoy doing, so I make it work (and I get the watch the movie several times, so that’s fun). I save up my spoons and use them all on that night. But not this year. I have to be practical, I just can’t do it. I’m going to wrap the gifts on Thursday, the day before my infusions and on Christmas Eve watch the movie while I lie on the couch, watching my husband set the gifts out. Maybe I’m wrong, it’s possible I’ll be okay. But I have to be realistic and when I look at the facts, I will be out of commission.

Another big stress in my life right now is work. I wish I didn’t have to work, but I do and that is that. I’m at a place now where the person I work for is actually very understanding and accommodating, but there are still outside factors that are pushing for that to change. It is upsetting and my anxiety level triples when I’m confronted with it.

Then there’s the weather! I live in a cold climate… for now. Where I live there are amazing schools, it really is the only thing that has kept us here. My son is Autistic and does much better when incorporated in a regular class, our school district is one of the best in the country for this. They’ve bent over backwards to accommodate his needs and make sure his education comes first. That being said, I am SO over living here!!! I need to be in a warmer climate. My body is screaming and begging me to move. I need to be in a place where there is little humidity and less extreme changes in weather. I used to live in Texas, but the allergens there were horrible for me (even though I love the Hill Country and would move back there in a second if it weren’t such a huge problem for me). So, we’ve talked about moving as soon as both kids have graduated high school, probably to New Mexico or Arizona. Our youngest is in 5th grade… there are times (like right now) that I feel like I’m never getting out of here!

I’m sorry this has been such a negative post! As most of my readers know, I always try to add at least a tiny little bit of positivity into everything I write. Right now I’m just in a lot of pain and having difficulty communicating any semblance of strength or inspiration. I will say this though, I did see the new Star Wars movie! It was really, really good. 🙂

Being Thankful in the Midst of Chronic Pain.

November is a month (typically) filled with posts of gratitude and daily updates on what people are most thankful for, but when you have chronic pain/illness Thanksgiving can be very difficult.

I am not going to sit here and say that being thankful is easy… it is NOT. I’m lucky enough to have things in my life that keep me grounded and that I am extremely grateful for. But more often than not I feel quite the opposite. I grumble at the prospect of another medical test, I moan about how desperately I want to eat the foods I used to be able to eat, and I cry for the life that I “should” have had before my body rejected me. I don’t like feeling this way, but I recognize that it is my human nature to want something better than what life has given me.

I used to suppress that part of my personality. I would always put on my mask of gratefulness and fake my way through life. There are a lot of times I still have to do that (I work in customer service, I have no choice), but I refuse to be an artificial version of myself with those I care about. They deserve better and so do I.

Some people can’t take it. There are people that look at me and all they see if that bubbly girl that used to have so much life! Now I’m always so “cynical”, when did this happy person get so cynical?! A- I’m not, I just roll with what life gives me. If life gives me one piece of crap after another, I can’t be held responsible for my attitude. B- I have always been this way, now I’m just not faking my way through my day.

Does that mean I’m never grateful? No, of course not. As I said above, I have so many things to be grateful for and I am, very much so. I just find that when in constant pain, it can be difficult to express properly. Just typing a daily “today I’m thankful for…” post feels empty. I’m in no way saying people shouldn’t do those posts! If that is helpful for them, go for it. For me, it’s just another thing I have to fake my way through, I can’t do that anymore.

Every day my gratitude is expressed in the things I do, not in the words I say. I tell my kids how much I love them. I thank my husband for all he does for me on a daily basis. I work until I can hardly stand it anymore, because I love my job and I appreciate the opportunities it provides me. I do whatever I can for my extended family, because they’ve done so much for me.

I’m blessed to have people in my life that care about me, I know this. I wish everyone could experience that love. I also have pain, I do not wish that pain on anyone… ever. So when I say I’m grateful for anything, it is huge. Monumentally huge! My body is literally fighting me, every single minute, of every day. I will not make empty promises, nor will I pretend to be grateful for what I do not have.

For those that do not have someone in your life that helps you, there is still hope. There will always be that one thing to get you through. Simply find it. Grasp on to it and do not let go. Don’t let anyone push you to be anyone or anything you’re not. If you’re in pain, never let anyone invalidate that feeling. You’re allowed to express how you feel! You are important. You. Are. Important!

Finally, I am thankful for you… really.