Looking Ahead

One of the greatest things my dad taught me to do was to journal. I keep one journal in which I call the “one liner.” At the top of each page is the date and on the right column is the year. Each day I write about one to three lines of what occurred on that particular day. I do this every day no matter what. It takes roughly two minutes tops. I’ll give you an example from my “one liner journal” so you get the idea.
January 5th
2012: Rest, 37 weeks pregnant!!!, watched the movie “One Day” (the book was better)
2013: yoga, pain dr app (not happy about it) Kayci and I played in the waiting room forever,
food shopping, pharmacy, bad night
2014: Freezing outside, worked out with Kayci (she danced for an hour straight as I did a
video, juice, Penguins play, yoga nidra meditation, visited neighbor, one blog post,
made dinner, relaxing night, read for 2 hours!!

Oh, how much can change in a year!!! I cannot believe how unhappy I was last year at this time. Every week I was at the doctor’s office, once again looking for a cure for my chronic pain. If I could I would show you each day for two months straight so you could see the difference a year can truly make. Once again, looking for that cure to my chronic pain not only made my pain worse but it took away any time to do the things that help me manage my pain without treatment. I am so happy I got myself back on the right track. I still struggle and there are still days that I write in my journal: this day sucked! But, on the grand scheme of things I am in a completely different place.

I am so grateful that I keep this journal. It shows me how bad things can be and how great things can be. I encourage anyone (with or without an invisible illness) to keep a “one liner journal.) I did it while I was suffering and being able to see that every day keeps me going in the right direction. It is perfectly okay to not be okay, just do not lose hope that things can and will get better.

Advertisements
Uncategorized

Looking Ahead

Image

19 thoughts on “Looking Ahead

  1. Hi! Yes, searching for a cure or a diagnosis is time consuming and also consumes our mind. My mantra each day is the fact that I don’t have that many days left and it is important to enjoy each day as though it is my last. As we age our priorities change and I am careful about using my time mindfully and spending time with the people that really count. I no longer allow others to waste my time! Great blog and thanks for encouraging me to journal. Be well and happy, Valda

  2. jenusingword says:

    Hey kitty. It’s been awhile for me now, I’ve been doing pretty poorly since Thanksgiving. Seems like when the holidays come, I go down. I haven’t been able to take any meds for some time now too. It’s been so, so bad. I am to the point now that I must go about getting care from a doctor again. Thing is, I have never been fond of the doctors. I feel like they don’t believe I’m in pain, as if I am making it all up. I need your advice. I know that you advocate trying to not take meds, etc. but I’m hoping that I can go to a doctor and in the end, find out what’s wrong and hopefully, prescribe something to help me. My biggest hope would be to be in care, on something to help me manage the pain, and work towards having the healthy lifestyle you live. It isn’t that I just want meds and that’s it. I just need something to help this. Since not taking meds on a regular basis, life is at it’s worst. I even have issues with my sleep where I wake totally drenched in sweat, it’s something I don’t understand but when in this pain, it’s a regular occurrence. Everything is at it’s worst. I finally, like many others, have health insurance and want to find a doc. But I worry about the things to say. I worry about proving things and properly explaining what is going on but not being looked at like a criminal. Any advice would be so appreciated. I want to start taking care of me and have a life. I just need some help, it’s been a nightmare. I have not been coping well at all. I haven’t blogged since before Christmas time too. I’ve been so depressed and miserable. I feel like I can’t go on.

    • You poor thing! I have been there so many times! I honestly have been at points where I really did not think I could go on. I honestly still am unsure of how I made it myself. But you will be okay…I promise. I do advocate not taking pain meds, however I would be a total fraud if I hadn’t been someone who used to take pain meds and every medication possible for my chronic pain. I only advocate not taking pain meds bc in my opinion/experience/knowledge yada yada they do end up making the pain worse. HOWEVER, YOU do need to see someone for help and possibly medicine. Screw any doctor who does not believe you are in pain. If you give me more info about yourself, your pain, any dx you have been given, the state you live in etc. I can help you a lot more. I’ll do some research for you and hopefully be able to help. You do not have to prove anything to a doctor, if he or she does not believe you then you find a doctor that does. You need to see a pain specialist. I am here for you. Email me specifics so I can really do my best to help you. jesmar288@yahoo.com It is okay you have been depressed etc IT SUCKS ASSSS and can only be understood by someone who suffers from chronic pain but we just have to pick you up, find you the right care, and start getting you in a good place. email me!!! xoxoxoxo Promise I will do anything I can to help

      • jenusingword says:

        I will try to examine things and send u an email for tonight to tomorrow. Thanks for everything!

    • Hi Jen, I’m so sorry you are feeling so poorly. I have been there too. Look for a primary care physician that has an understanding of fibromyalgia. You can call doctors’ offices to find out if they treat fibromyalgia. I don’t know what type of insurance you have, but you may need a referral to a specialist. Currently Rheumatologists are seeing fibromyalgia patients and they have the ability to rule out other possible differential diagnoses. They can also treat Willis-Ekbom disease (rls) if you have that too. Make sure the doctor is in your insurance network of providers so you won’t have a higher co-pay. I have gastroparesis (a gut that doesn’t work) with severe abdominal pain in addition to all the other fibromyalgia symptoms. With treatment I feel better and am able to cope with this illness. If a doctor is rude to you or doesn’t seem to be on the right track then it’s time to change doctors. I have finally found doctors that will help me and not just spew that I am a head case. You can get to that point too. I also made a list of symptoms with an approximate date of onset that I can hand to doctors instead of trying to remember all of that. I would still tell my story and talk about the symptoms that are bothering me most, but that made it a little easier. If the doctor is annoyed that you handed him/her a list then it’s time to get another doctor. Ha! You take good care and I am hopeful that you can find some good medical care very soon. The hardest part is just getting started on this journey. Blessings to you, Valda

      • jenusingword says:

        This is really great advice! I have wondered throughout the years if Fibro is what is going on. I’ve also worried that is what is going on too, I have friends that have it and their care is awful. Their doctors won’t treat their pain adequately with pain meds, instead opting for an antidepressant and sending them on their way. The whole thing sucks so much! I also have intense stomach pain too. It seems like I’m bothered by so much! I’m not familiar with the other thing you talked about but asking for a referral to a rheumatologist seems like a great idea!

      • It took me a long time complaining of abdominal pain before I was sent to a Gastroenterologist. I should have just respectfully demanded to see one. But even then I was just given Reglan to get my stomach to empty and never got a diagnosis. The diagnosis is actually gastroparesis. That is a gastrointestinal system that doesn’t work right so the stomach doesn’t empty, when you eat you get full right away, lots of nausea, abdominal bloating and constipation with bouts of diarrhea for some people. It is a miserable problem to have. Reglan helps the nausea and I am able to eat better . . . too much better in fact! Ha! I also see a pain doctor. They are better versed in how to manage pain. Many doctors are afraid to manage pain especially because of all the Vicodin overdoses. You just have to establish a trusting relationship with a pain doctor. My pain doctor gives me enough refills for 3 months without a drug test, because he knows I’m trustworthy. Take care and be well. Warmly, Valda

      • jenusingword says:

        I’m sorry that you went through such an ordeal, hopefully you are feeling better these days. I don’t think from the symptoms you’ve described, I don’t think that is what is going on with my stomach pain. Then again, you never know too. I’m going to start figuring out stuff on Monday. I haven’t ever received a benefits package or anything other than a letter stating I will have coverage starting Jan. 1 of this year. I live in Arkansas and our state is one of few that expanded their Medicaid program, with no income or money, I of course qualified. What I know is that I’m going to be on a Medicaid type thing. I tried to look into things online to better educate myself but I found that to be just frustrating, especially given that all over the site they talk about information being outdated, etc. I just have no idea how it works, what or if there will be any costs for me to see a PCP, etc. I have so many unknowns. Then there is the task of finding a doctor that I can feel good about and that they aren’t looking at me like a fraud from the get go. I’m 33 and while I look pretty decent for my age, I feel like it also hurts me too. I also feel like every time I’ve tried to get to the bottom of this chronic pain, with other mental issues as well; I feel like they dismiss me after doing basic things like X-rays, an MRI, etc. Those tests have all come back normal and so when that’s happened they take a different attitude then and start acting like I’m just a pill popper trying to find meds. It’s the worst. Hopefully, I can find someone that will be a fresh start and will take me and all my symptoms seriously..

      • Physicians can be quite cruel. They seem to be suspicious of patients, especially women, before they even have time to sort health issues out. My girlfriend broke her pelvis some years back and the doctors acted as though they thought she was making it up. She didn’t receive care for several days, which could have been a fatal mistake. Having worked in healthcare I have seen other times that doctors thought a female patient was just “making it up”, which proved to be another fatal mistake. A diagnosis of fibromyalgia is even more problematic for women. Getting back to your situation, there are many doctors that may not accept Medicaid since it is so poorly reimbursed. Typically patients end up being a charity case for the physician, because it costs more to file the required paperwork than it costs to just treat the patient for free. So your challenge will be to find a doctor that accepts Medicaid and treats fibromyalgia. Obamacare has not done enough to make sure people receive care. Simply having healthcare insurance is not the same thing as access to care. This is a tough journey and it will challenge your spirit, but with determination and fortitude you will get through this. Rely on all of us to help give you emotional support during this time so you don’t feel alone. That’s the worst part of this illness. Take care and keep your hope in a high place. Warmly, Valda

      • jenusingword says:

        Not great. I had that moment of wanting to get back on track and it didn’t stick. The weather has really affected me so much. It’s snowed and the kids are out of school along with my bf’s mom working from home too. I’m sorta a creature of habit and schedules keep me sane and with the weather interfering with everything, it’s been awful. I haven’t been able to do things freely like I want to and I’ve just been down a lot from it and the pain of course. I’ve been managing the pain better due to meds but I will soon run out and will be miserable again. It’s frustrating too because I need to seek out care and start trying to get help with all these issues but the weather has been such a mess that it hasn’t allowed me to do anything really. Offices have been closed and the roads here are terrible so it’s just been a waiting game. How are you? Hope your family and everyone is well!

      • I’m so sorry Jen! I have been there and its awful. I totally forget which state you live in? Sorry just writing back, life has been insane! I think of you daily and send you good energy. This too shall pass and things will get better. Everything changes, nothing stays the same. Fact. I’m always here for you ok? email me anytime

      • jenusingword says:

        It’s so nice to talk to you. This morning is awful and I just feel like I can’t move at all. I’m going to try to start searching for a dr Monday. And I live in Arkansas, a place I’d like to never live in but it’s what I know. I’m a Yankee in the South, imagine that.

      • I wish I lived closer so I could help you. I can do some research for you to find a pain specialist in your area?? Always here if you need to vent!!!!! I live in New Jersey doll…..I need warm weather!

      • jenusingword says:

        This week is finally warming up here but it looks like you are part of the ice storm they are currently fussing about. I hope you guys are okay!

  3. Hi! Just one more thing. I noticed that some of the advice was not to take pain meds. I take 2 tramadol in the morning to help me get going, in the middle of the day and then 2 Vicodin at bedtime. This is not a heavy duty pain management regimen and I avoid taking more than that, because I have concerns about getting to the point that pain meds don’t work for me anymore. I’m not pain free, which is an unrealistic expectation anyway. But the pain meds take the edge off, help the generalized body aches, and ease some of the Willis-Ekbom Disease symptoms. The body aches I have make me feel as though I have the flu, but with these meds those body aches are limited so I can do a few things around the house and prepare simple meals. The decision about medications should be between you and your doctor and is an individualized plan of care. Some people do well without analgesics and some people do better with analgesics. This is a personal decision. Take care, Valda

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s