About Teresa: We don’t always have it easy, but who does? We’re a family and there’s plenty of love here. Living life on the spectrum with my son, Squeaker, and my three year old, Big Guy, presents all sorts of challenges, but it also presents us with all sorts of opportunities for growth and learning. I’ve come to realize my son and other people like him are truly special and that I am blessed to know them as people, not as their disabilities. My biggest message is that every day I get to Embrace both of my children, I feel blessed as a mother and I always try to see their beauty shining back at me. Read more from Teresa at Embracing the Spectrum.
I’ve spent years searching for answers. I can remember a conversation I had with my husband more than a year ago where I said to him, “I wonder if there’s something genetically wrong with me that just makes me predisposed to illness.” It just seemed at the time that I always felt like, well, crap. And I’d already been through the wringer, quite honestly.
When I go to a new doctor and fill out the list of medications and surgeries, I sometimes scratch my head and wonder if I’ve missed anything. I thank God for my Walgreens app, because it allows me to check what meds I’m on while I’m sitting there filling out paperwork. My surgeries started when I was only 2 years old. I’ve had a tonsillectomy, tubes in my ears, my gallbladder removed, arthroscopic surgery on my right knee, laparoscopic surgery for endometriosis, and the list goes on.
I always hated going to the doctor about an issue because I felt like a hypochondriac, but they seemed to affirm my fears every time. Sometime always seemed to be wrong with me. Hashimoto’s Disease, prediabetic, degenerative disk disease…you name it, I’ve got it. I drew the line at having surgery on my back, by the way, and the doctor agreed that I’m far too young to consider changing the structure of my back.
My hands and feet go to sleep, my whole body hurts, my memory isn’t functioning appropriately, my bowels started acting up, and I’m tired all the time, so I started investigating that. Who can effectively parent two children, manage a household, and then go to work with all of that going on? Well, after a normal colonoscopy and upper endoscopy, I figured I just looked like a huge hypochondriac with IBS. I continued going, though. I got a bunch of lab work done for rheumatology and Lyme Disease and, thank God, that came back normal. When I got to the rheumatologist, she did all of the tests for tender points for fibromyalgia, asked me what seemed like 500 questions, and diagnosed me with fibromyalgia.
What did I learn? Everything that I’ve experienced for the past few years of my life could be attributed to fibromyalgia. Sleep problems, widespread pain, TMJ, depression, pelvic pain, and digestive problems are all attributed to fibromyalgia. It makes me wonder why on earth no doctor ever suggested the diagnosis before. Why did it take me talking to a Health Coach through my insurance before it even got suggested? They would have done all of the tests I’ve already gotten done prior to diagnosing me anyway to rule out other health problems, but it leaves me frustrated because perhaps I could have known about this sooner.
But the problem is that the rheumatologist did nothing further to help me. She suggested I get more sleep and exercise. All of the medications I’m on already were medications she would’ve already prescribed. Apparently, I’m long-term sleep deprived and my pain and memory issues will not improve until I start consistently getting more sleep. I’m supposed to go to bed when my kids go to bed since Squeaker gets up sometimes at 4 in the morning and “forget about time with my husband” until they get older because sleep is more important. As for having time to wind down and time to myself? I guess that, too, will be foregone until teenage years, if it ever happens.
I guess the good thing is that I have something to call this feeling I have every day. I still feel a bit hidden in the darkness because I don’t want people to think I’m whining when I’m hurting. It’s hard to explain to someone something they can’t see or feel themselves. It’s just something I have to learn to cope with since I now know it’s not something that can be fixed. I know there are some great support groups online for fibromyalgia, but I haven’t explored them yet. Aside from that, I guess I’ll just pray that eventually getting enough sleep will not mean sacrificed time with my husband.
Do you have a chronic health condition? How do you cope with it?
Sometimes a name just doesnt help. As soon as I saw you had your gallbladder removed, I knew it would cause you some form of IBS. For some reason, the lapro-type surgeries cause this, but when they cut you open it doesn’t. SO many people I Know had their GBs out and they have to deal with that the rest of their lives. You can research it – it’s totally a thing!
Oh, I’ve had the IBS issues my entire life! I can remember going to the doctor when I was in high school and the doctor telling me, “Well, if it bothers your stomach, just don’t eat it!” Yeah. I just got diagnosed with “nonspecific colitis” recently.
I just take one day at a time and know that I will have good days and then I will have bad days. I was diagnosed with Multiple Sclerosis when I was a teenager so I have been dealing with it for about 15 years now. Like I said all you can do is take one day at a time and hold on!
Yeah, you’re right. I guess that’s all I can do. 🙂 Every day is a new day.
if there is one thing I can relate to is having an invisible illness and not wanting people to think you are whining when you are really hurting.
Yeah, it really can seem like you’re being a burden when you feel like you’re complaining all the time. I bet more people understand than we think, though.
I do. Sadly I was diagnosed with psoriatic arthritis. I am still trying to figure out how to cope. There are many days that I am on the verge of tears from pain and the guilt I feel with not being able to do the things I want to do.
I’m so sorry. That has to be painful! Sometimes my hands/wrists hurt to the point where I can’t open things and it sucks to not be able to do what I was once able to do, so I can somewhat relate. I hope you find some relief soon.
I do not, but I’m around lots of family that do. My DH has rheumatoid arthritis and will have tubes in his ears for the rest of his life (not related). His sister has lupus. It’s a shame that it took so long to get a diagnosis, but unfortunately doctors don’t seem to look “holistically” at things. Everyone has their specialty. The only reason my husband was diagnosed so early on with his rheumatoid arthritis is because our primary doctor knew his sister has lupus and he has a first cousin with the same arthritis since childhood.
Hang in there and take care of yourself.
I got screened for both of those things and thankfully I do not have RA or Lupus. Lifelong illnesses like these are tiring and the only thing doctors can do is treat the symptoms. I’m doing my best to take care of myself considering the life I live. lol.
Geez, I have very similar issues, which is making me wonder….. I’m glad you got closure and can finally work towards and wellness plan.
My advice would be that if you feel that you aren’t getting enough answers from your doctors, seek advice elsewhere. The only reason my doctor couldn’t help me further is that I’m already on a cocktail of medications. There are meds out there that help with Fibro. I just happen to already be on medications that are recommended for it.
I’m soo sorry you have to live with so much pain, so often. I have a friend with fibromyalgia and it breaks my heart to see what she goes through.
I wish they could do more to help with it, honestly. “get rest, avoid stress, and exercise” seems like great advice, but it’s impractical when you’re working a job where you can’t avoid stress, have two children, and are expected to do more than you have enough hours in the day for. You just take one day at a time and hope for the best.
Fibromyalgia gets a bad wrap. I often hear people say things like, “Fibromyalgia is just a diagnosis they give to whimps that can’t handle aches and pains.” Or something along those lines. I think that’s terrible. Fibro, as many people call it, is a real thing. Just because it’s only been on the radar for awhile, doesn’t mean it isn’t real or that it was fabricated to sell medications. Remember, there was a time when mentally ill people were thought to be possessed by demons.
That’s so true, Courtney. I come across so many people now that say, “Oh, you have it too?” It’s like a member of a club now. I’m not alone. It’s real and people suffer from it. I’m hopeful in a way…one of my coworkers said she’s gotten hers under control. Maybe I can get mine under control too!
So glad you were able to find a doctor that could at least give you an answer on what was wrong. I admire your ability to share such a personal post and open my eyes to what people with Fibromyalgia are going through.
Thanks, Shell. I’m thankful to have something to call it at least, rather than just have to continue searching and searching. I’m done going to specialists for a while!
I know that every year, when the weather gets colder, my neck stiffens up really bad and hurts so bad too! I hope it is not a start of something!
If you’re really concerned about it, you can check out http://www.niams.nih.gov/Health_Info/Fibromyalgia/default.asp for more information.
Wow, your story struck a chord with me. I can relate to many of your symptoms, though I’ve never been diagnosed with fibromyalgia (I’ve not been tested for it either). I understand you’re not sure whether a diagnosis helped, but at least now you can be sure you’re not whining for no reason. I don’t even have the IBS diagnosis for sure (it’s just probable, but it could be pelvic floor dysfunction just as easily), and I am a member of some chronic illness support groups on FB and feel like a giant hypochondriac for joining them. Now I also have multiple mental illnesses and disabilities, including autism incidentally, and I do admit I look for labels for my every thing. Anyway, I hope you feel somewhat better at some point, even though there’s no treatment that you aren’t already on.
I may still wind up going back to the doctor to get medications adjusted at some point. Quality of life could be better…including my sleep. Sometimes it’s good to know that you are, indeed, NOT whining for no reason.
THanks for sharing your story. I hope you have answers and comfort in your journey.
Thanks Krystal. I’m getting there. Takes time. Every day is a new day!
I had an upper endoscopy and colonoscopy where they did cultures for food allergies and they didn’t find anything. They even tested for Celiac’s Disease. I think I may have actually been tested for just about everything known to man at this point! lol
I know a couple of people with the same thing so I’ve heard many of the things you are sharing. I’m sure it must be a challenge to deal with on a daily basis. Thank you for sharing your story.
Thank you for stopping by. I hope that sharing it helps others to understand.
My Mom was recently diagnosed with Chronic Fatigue Syndrome which sometimes also has a fibromyalgia diagnosis with it. It’s very hard because she doesn’t have a diagnosis that is treatable or that people understand. And it breaks my heart to see her not feeling like herself so often. What you said about good days rings so true for her. Hugs to you I understand what a frustrating journey this can be.
Yes. Chronic Fatigue Syndrome is often part of Fibro. I’m sorry your mom goes through that. It’s hard being tired all of the time! I feel that way too. I get so jealous of my son’s boundless energy!! If I could just have one teensy little ounce of that energy, it would be magnificent!
I’m not too sure it falls under chronic health condition, but I suffer from migraines. It’s awful, but I deal. Lots of people deal with worse. I am thankful it’s all I have to deal with because so many deal with much worse!
Migraines? I’ll give you that! I suffer from migraines, too. They stink! I used to have migraines several times a month until they put me on Topomax. Now I have 2-3 migraines just around my period. That’s still pretty terrible, but not as bad as before if I put it in perspective. They’re debilitating. I walked around with one all day at work on Tuesday and could barely think straight. I’m sorry you deal with them!!
I have ulcerative colitis, so I know about a chronic pain condition. I also suffer from a lot of your same symptoms, so I totally sympathize with you here!
Man, I don’t wish that on anybody! I went through a colonoscopy to look for that and came back with “nonspecific colitis.” I’m glad it wasn’t worse than that. I kind of just have a spastic colon. Have they been able to give you the right combination of medications to help with your condition?
Honestly, the meds they kept pushing on me made me feel worse. After 3 years of trying different ones, with no results, I finally took my health into my own hands. Researching a more holistic method, I don’t take any medicines. With proper diet, exercise, and probiotics, I have put myself into remission and have stayed that way for 4 years. I am so glad to hear you didn’t have an aggressive form of colitis. I wouldn’t wish that on anyone either! It’s a really rough illness to live with.
it is amazing to me how doctors can misdiagnose and not care enough to get to what is really wrong with people. My husband died 10 years from cancer, stage 4 by the time we found out. His initial diagnosis and treatment was for depression all because he expressed that he was experiencing extreme fatigue
I’ve found that as soon as doctors find out that you’ve been diagnosed with depression or anxiety, they tend to blow off pain or fatigue symptoms as part of depression. I’ve had to fight to get doctors to take me seriously. I’ve thought to myself, “I KNOW this is not all in my head.” It’s rough. I’m sorry about your husband. That’s really sad. That shouldn’t ever happen to anybody.
That is a shame that it took the coach to bring it up before the doctor did. But hurrah it’s been diagnosed, that’s always the first step, right? My mother in law has it, and she’s learning to cope very well, but it took her a long time to get diagnosed too.
Wishing you well!
yes, you are right. diagnosis is the first step. getting symptoms under control is next!
Sorry that you have to go through this! It’s unfortunate that a lot of people write this off as deal with the pain.
Oh, you are so right! My mom actually told me, “you’re just getting older. people feel more pain when they get older!” Geez. No one had any clue the level of pain or fatigue I was dealing with. I just keep my mouth shut around people who don’t understand.
I don’t but I do know what you are talking about because my husband does. He doesn’t really talk about it because he feels like he is just whining or “faking” it since no one can SEE the pain he is going through.
It’s hard to talk about it when you feel it all the time. And I guess it’s also kind of pointless. I mean, what can I really do about it by talking about it? It’s like if I constantly talked about how we don’t have enough money for teachers. Well, we still don’t have enough money for teachers. No one’s doing anything about it. I’m just complaining at this point. No one really wants to hear it. I just have to kind of learn to deal with the situation the best I can, you know?
My son (he just turned four!) has a chronic health condition, and it breaks my heart. It definitely makes us even more thankful for the happy + healthy moments because we know what life can look like for him when he starts hurting or when he gets sick. Thanks for sharing your story and your experience.
It’s definitely best to be thankful for the happy and healthy moments. If you don’t mind me asking, what’s your son’s condition?
I’ve known many affected by this disease. It’s a horrible feeling!
I’m sure they’re glad you’re there for them!
Thankfully I don’t have any chronic illnesses. I do have chronic life stress and struggles and I cope by eating chocolate. lol
Sometimes I cope by going to Starbucks and getting a nonfat venti iced chai tea latte, but we’re kind of broke these days so it’s probably going to be a while before I can do that again. Oh well. I guess I need to find a different way to cope!
I don’t have a chronic illness, so I can’t even begin to understand how difficult this must be, but I do have chronic migraines, so I can at least sympathize with the pain, and lack of understanding from others who don’t suffer the way I do. They just can’t understand, so I just leave it be. When they complain about how much my migraines affect my life (really it’s their lives being affected that make it annoying for them) I just brush it off. I have however, never tried to find a bright side, and that’s what this post inspired me to do. So thank you!
I suffer from migraines too. They’re horrible! I don’t talk about my chronic health problems with people that I know won’t understand. I have a list in my brain of people not to talk to. It’s actually a bit longer than it should be, but whatever. lol. I’m glad that I’ve helped you find the bright side. Keep on keeping on!
I hate that you have to be in so much pain. EVeryone I know with fibromyalgia says it’s a frustrating condition that can’t be explained. That’s not easy to live with.
It’s not easy – but some people learn to manage it better. I’m working on trying to figure it out.
Yes I have COPD. I face each day as new. I refuse to be defined by my disease. I say You must always look for something positive.
You’re right. I’m sure COPD isn’t something easy to looking for positives with either. Good for you for looking for positives!
I’m sorry you are going through this. I hope you find some relief
Wow! Thanks for sharing so much. I don’t have a chronic illness. I appreciate you shedding some light on what it’s really like for those who do.
Thank you for reading! I’m glad to share.
I do not know what it feels like. I do however hel whenever I can where there are causes that I can help with.
That’s wonderful that you help with things like that. I do the same thing. Whenever I see a good cause out there, I always reach out.
I have a thyroid condition that is just refusing to be managed. It is very irritating. Also- I will be checking out your blog- my daughter is HFA. #SpectrumMomsUnite