Days like today, for me, remind me why I keep fighting for my health, life, and love. I feel like I should write some long and well thought out emotional piece here, but I just can’t. I would just ask that you please remember my family to your God, Goddess, or just send good wishes to the universe. We need all of it we can get today, Avery Marie and Mason Samuel will NEVER be forgotten.
I didn’t realize it has been a so long (nearly a year) since I have last posted. Sorry about that. I thought I would give you a quick rundown of my year. It’s been kinda busy.
Ok, so let’s start with my health. My General Practitioner retired on me, so I had to spend some time finding a new doctor I could work with. Always a fun endeavor (NOT)! I did eventually find a good doctor I could work with who takes me seriously. More so even than the old one. When we discussed that I had been diagnosed with Fibromyalgia, he just rolled his eyes. My family and I have never truly believed that diagnosis for me. I just figured that they had to put a name on it for the insurance company so we could at least treat the symptoms.
The new guy, while continuing the treatments and meds I have been on, immediately started looking in other areas for answers. He ordered tests for things I have been wondering about for years. So far, we have ruled out Celiac, heavy metal poisoning, and a stroke. He is questioning some other neurological issues, but is waiting on other testing first. We are looking into lyme disease, and are waiting on test results for that. He also sent me to see a stomach doctor. I am scheduled for both an upper and lower GI in a few weeks. We are looking at something called a “leaky gut”, some kind of bacteria (the name escapes me) and Crohn’s.
I may not have all the answers yet, but I am confident I have a medical team now that will keep looking till we find them, finally.
In other news, I have 3 grandchildren now as well. Jordan is just turned 2. Kylie is almost 1, and Zayden is 7 months. I will find pics and post them in a bit if I can. WordPress doesn’t seem to like mp4 videos which is the most recent stuff I have.
My new doctor has also started me on an anti-anxiety medication which is definitely helping. My depression and anxiety levels are dropping, or leveling out, or whatever is right way to word that, lol.
The only other thing I can think of right now, is that I have been working on a one-shot fan fiction (my first EVER) for SVM. It’s an Eric-Sookie fic, and could desperately use a beta, or co-writer or something.
As always, I will answer any questions you have or simply say hi.
Take care of yourself, without a healthy you, your family and friends will suffer.
This is a very well written, easy to understand explanation of Fibro. I encourage anyone who has a friend or family member with this disease to take a look.
Explaining fibromyalgia is very difficult without being overly technical or complicated. If you, like myself have had this condition for sometime by this point you know all about trigger points, neurotransmitters, stages of sleep and patterns, myofascial syndrome, SSRI’s , and so on and so on. We forget how complex this knowledge is to people that have no understanding, that is, until you see their “deer caught in headlight look” and their eyes just glaze right on over shortly into your conversation. At that point, I am like, ok then and change the subject with a blow off…
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Ok, I know it has been a while since I have posted. I have been trying very hard to get away from the severe depression that has made all my posts sound like a pity party. Hopefully I have been successful. i have also learned several things in the past months.
First is a few changes in my diet has made a difference in my pain levels. I have almost completely eliminated read meat from what I eat. I eat mostly chicken and fish now for protein. I do enjoy beans, but they don’t like me so much. I have to avoid things that will give me gas, or be willing to face the digestive issues that result and spend most of my day in the bathroom. That means no Diet Pepsi too, dammit.
I have cut way back on the amount of coffee I drink. I was drinking up to 4 full pots of coffee a day. It was extremely rare to find me without a cup of coffee nearby. I slowly reduced that to two pots, and now it is just as likely to find me with a cup of decaf coffee as it is fully leaded.
I am also trying to cut way back on carbs. This one is actually harder than giving up most caffeine. More carbs means more pain, but they are sure hard to get away from. Particularly because I absolutely adore pasta.
Growing up, I had a super fast metabolism so that i could eat whatever I wanted whenever I wanted. Losing weight was never a focus, gaining enough to keep my doctor happy was a different story. No matter what i did, I couldn;t gain any weight. I am 5 foot 10 inches tall, and didn;t break 100 pounds until I got pregnant with my first child. I ate alot of “fillers” as a child, things like pasta and breads just to get full. I always ate a healthy diet, I just ate a lot of other stuff too. Anything to get filled up for a while. Making diet changes are hard for anyone but growing up the way I did, makes denying myself that much more difficult when it comes to food. I have never had to do that before. Changing over 40 yrs of diet habits is proving difficult to say the least.
The upshot of all these changes is that my pain levels are decreasing, which makes the depression easier to deal with. One other change that has made a difference for me is a new medication. I went to a gyno for a checkup and annual inspection at the urging of a friend. I haven’t been in years because I had a hysterectomy 10 years ago. I figured I can’t get cervical cancer because I don’t have a cervix. They told me when they took my parts out that I would go through menopause like anyone else because I have 1 ovary left. it should produce enough hormones to make me cycle monthly like everyone else, (I just would not have a period) until it was time for menopause. I guess that is not exactly true. The new gyno immediately put me on two forms of estrogen telling me basically my only ovary is burning itself out prematurely trying to keep up with my bodies needs all on its own. (or at least that was what I think she was trying to say)
Either way, the hormones have helped as well. I can think more clearly. Before it was like thinking through a fog cloud surrounded with cotton balls. This is sometimes called “fibro fog”. You just can’t think straight, lose your train of thought, or simply lose your words. I knew what i wanted to say, but didn’t have the words to do it. I felt like a toddler trying to explain physics to a science professor a lot of the time. While i am by no means 100%, I am definitely improved. YAY HOO! There are other things the HRT has improved, I just don’t have the right words to explain it. You know how sometimes things just feel off or wrong but you really can’t put it into words properly? Ya, that.
So, now that i have rambled on for quite a while, and accomplished not much of anything I will release you to the rest of your day, and thank you for reading. Have a cup of coffee on me, but be warned one is decaf…which one is anyone’s guess. Good Luck!
This, for some unknown reason, made me think of Eric Northman and Sookie Stackhouse.
I guess I pretty much covered the depressed part last time. (More like beat it to death, but oh well) So, I thought I might touch on the disabled part now. I am sorry it is so long between posts for those that follow and are interested in my blog, it is just very hard to type (physically) for me and takes several weeks to get a decent sized post ready. I know my posts are still riddled with errors, but I do the best I can. I guess a big part of being disabled is needing help from others, so I thought I would pass my thoughts on regarding this subject.
For those that care about and for a disabled person, the first thing I want to say is PLEASE wait for me to ask you for help or ask if I need help politely. Don’t automatically jump in and do things for me, even if it is a struggle for me to complete I want to do it myself. I feel like a 3 year old some days. Constantly telling people “No, Me!” Ok, so maybe I don’t sound exactly like that, but it sure feels that way sometimes, LOL.
A second thought I often have is that if I do ask you to help me,whatever it is and whatever you do keep the pity off your face, and let me do as much of the task as I can, let me keep as much of my independence and dignity as possible. Needing assistance for mundane tasks is humiliating enough all by itself, seeing pity on the faces of our loved ones just makes it that much worse.
As I suspect is normal, I have learned new ways of accomplishing many tasks of living. It may look awkward as hell to watch, but most likely, it is the only way I can do it. (There goes that three yr old attitude again, lol) For instance, I am right handed, part of my disabilities is that my right hand is basically frozen about half way to a fist, makes it pretty hard to do just about anything. However I have taught myself to rely on my left had for most tasks. It will never come naturally to use my left hand so it looks and feels awkward as all getout. But I appreciate y’all letting me do it anyway, whether it be feeding myself, dressing myself or simply opening the refrigerator door for a Dt Pepsi.
I know there are things I cannot do, or should not do for safety sake. asking for help for these things is difficult enough. I am 41 yrs old, I should be able to take a roast out of the oven, I cant. I am well aware I can’t and that even to try is dangerous. Unless it is a matter of my and your safety, please allow me the respect to at least try the things I might be able to do. Losing my independence is difficult to adjust to, I want to keep whatever small amount I have left. If that means I get the roast prepared and then ask you to put it in the oven for me while I set a timer then that’s what I will do. I amy not be able to cook dinner for my family from scratch start to finish anymore, but I can still do some of it, please let me.
The one thing I would tell anyone in my situation, or that cares for someone in similar situation beyond respecting my independence and dignity, is PHYSICAL THERAPY!!! It may not be a walk in the park, it is very difficult and a lot of hard work, but so very worth it! Before my six months of (jokingly called) twice a week torture sessions, I was basically completely confined to a wheel chair and unable to do just about everything. I needed help feeding myself, with bathroom duties, hygiene, dressing, you name it. Now I can walk about 20 to 25 feet unaided, 300 to 500 feet with my walker, can feed and mostly dress myself as well as taking care of all my bathroom and hygeine needs. I do still rely on my wheelchair for longer “walks” like a trip to the mall with my husband for Christmas shopping, but I am not totally reliant on it anymore.
I guess the two main things I want to say here is leave the pity behind and celebrate with me the things I can still do,while encouraging me to try on other things. And don’t be afraid of, or turn away PT if or when your Dr suggests it. It’s well worth the effort.
As always, thank your listening to my ramblings and as ever if you are confused or have a question for me, feel free to ask. I am always willing to spread what knowledge I have or simply gossip and chat.
And one last thing, I am a PROUD, brand new Grandma. I simply could not leave my grandson Jordan Ray out of the spotlight. I had to tell you! Please forgive me if you get multiple alerts for this post, I had to find his best pic I have so far.
Living a fulfilling life with one or the other of these problems is extremely difficult. Living a life at all with both is nearly impossible, or at least for me it is. I am always happy to hear of, or meet, someone who is able to work past these or other issues and life a happy and full life. I have been unable to do it. This is probably going to sound like another poor me post, and I guess in a way it is but I really need a forum to say these things relatively anonymously. I thank you for listening (or reading, whatever is appropriate).
I think maybe a place to start is me, or rather what I think of me. In over 40 years, so far the only thing I like about me is my tattoos. I have a purple rose with a dagger on my chest above my heart as a reminder of my first suicide attempt, to never let myself go there again. I have also a red and pink rose with a blue butterfly resting on the stem on my left calf, this one is for my kids. No matter what they are my kids.
The last one is quite large, it takes up most of my left thigh. It is a Celtic cross with 3 blue roses towards the top, and the grim reaper with his sickle across the bottom. This one has several parts, the roses are for my kids, the Celtic cross is a nod to the Irish part of my heritage (German Irish, English, and Swede) and the grim reaper is for hope. I know that sounds backwards, but to me it makes perfect sense. Everyone dies. No one is immune to Grim. I can only hope he comes for me soon. Now I know how that sounds, and let me reassure you I have no plans to rush Grim along my way, I just hope it is my turn soon.
Now,enough rambling about the good part of me. My true self view…I am SUW UWOO. Translated to Stupid Ugly Worthless Unwanted Waste of Oxygen. In my entire life there have been 3 people who I felt truly wanted me around, Dad, Husband, and Best friend. Turns out I was wrong about Dad. When I got sick, and was at my worst he, along with Mom, both brothers, brother-in-law, grandmother etc, etc told my husband to “just divorce her ass, put her in a nursing home, and forget about her.” Husband refused and along with best friend have been fantastic at taking care of me, and getting me to doctor’s appointments, the pharmacy, and PT (when I had to go).
I have no self-esteem, self-confidence, or self-worth of any kind. I never have. I have lived with this attitude for as long as my memory goes back. I have never known different. The sad part is that I thought this was normal until my first suicide attempt in my early 20’s. I learned in the aftermath of that it’s not normal. My way of coping with the depression is probably not the healthiest, but has kept me alive this long so I’ll stick with it. OCD tempers some of it, some I release with music. I am a huge fan of Death Metal. Amon Amarth, Metallica, Slayer, Hatebreed, (you get the idea) are some of my favorite bands. Some I have just learned to deal with.
Now throw several chronic diseases on top of that. I have Fibromyalgia, Periphal Artery Disease, Emphysema, Osteoporosis, and a funky arthritis called Ankylosing Spondylitis. *say that 5 times fast Simply getting out of bed every day is physical challenge. It sure doesn’t make the emotional problems any easier.
Anyway, this is turning into a much longer post than I intended, and my nearly useless right hand is getting very sore from typing this up. So there is a snapshot of my mental state. Once again, Huge Thank You‘s to all of you for letting me get some of it out. Even if nobody is reading this, it helps to have it out there.