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From FM Net News: Several different energy producing and antioxidant supplements might be beneficial for reducing the symptoms of fibromyalgia, according to research published over the past few months.
Creatine and Co-EnzymeQ10 (Co-Q10) help provide fuel to your cells. More importantly, Co-Q10 helps power up your energy factories, your mitochondria, to produce more fuel. However, additional research shows that the mitochondria in fibro patients might be under attack from molecules causing oxidative stress, which can damage cells in your cardiovascular system, your brain, or other tissues in the body. Here is where fat-soluble antioxidants such as omega-3 fatty acids and vitamin E might be beneficial.
While the various research studies are promising, the Fibromyalgia Network wants to know if any of the supplements have brought about significant improvements in the way you feel. We are interested in finding out whether you have tried any of these and related supplements in the past year and what improvements in symptoms (if any) they provided.
For the most part, these supplements have little or no side effects and are reasonably inexpensive. We understand that budgets are spread thin and would like to determine which supplements are most cost effective. Results of .
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Friday, February 22, 2013
By Dionetta Hudzinski, RN, MN
Nurse Consultant: Pain and Palliative Care
Health and Wellness Coach
First of all most of you are thinking yew…doesn’t it smell awful? Well, you are probably confusing it with Cod Liver Oil which has a fishy smell/odor. Castor Oil has a pretty neutral odor. It is a thick, clear, light amber colored oil made from the Castor Bean. Castor Beans are poisonous if ingested. But surprisingly expeller pressed/ cold pressed Castor oil is NOT poisonous. Castor oil has been used for centuries as a home remedy for constipation and other illnesses. It also has properties that are VERY useful for the relief of pain. It is analgesic; which means it has pain relieving qualities. It is anti-inflammatory: which means it decreases inflammation. Lastly it is anti-pruritic; which means it decreases itching from a variety of causes. It is also a detoxifier.
My advice to my clients is “don’t drink it, apply it!” Castor oil can be applied like any other over the counter (OTC) analgesic (pain relieving) cream. It can be used as massage oil. It can also be used as a pack. I use it in all three ways. Castor oil packs make it not so messy to use. Once made and stored in sealable baggies in the freezer they are ready for use at any time; and they last for months so they are economical as well. Castor oil is relatively inexpensive. You can purchase an 8 oz bottle for under $8 and a 16 oz bottle for under $15. It takes approximately 3-4 oz of castor oil to make one pack the size of a wash cloth or small hand towel.
My first experience with Castor oil and pain was back in 1999 when I was attending the Academy of the Healing Arts here in Yakima WA. We were taught about the properties of castor oil, its history and use as a pain relieving measure. We were given the instructions on how to make the Castor oil packs, instructed on how to use these packs and we were given an assessment sheet that we needed to document before and after findings. So I dutifully went home and made my 2 castor oil packs. Placed them in sealable baggies and placed them in the Freezer and there is where they stayed for 2 months. One night I came home from work, my hands were aching and my wrists were sore. By bedtime they were throbbing from finger tips to my shoulders. I tried gentle range of motion exercises, took some ibuprofen, even took a half of a vicodin I had left over from some dental work months before. The pain just continued and I did not know how I was going to sleep. Then it came to me “the castor oil packs and my homework assignment” So I dug out the castor oil packs. Wrapped one around each wrist, covered each with another hand towel to protect my bedding and PJ’s from the oil. And there I was in bed thinking this was pretty silly to be doing, but homework was homework so here I was, waiting to see what would happen if anything. Then the improbable happened, 20 minutes after applying the castor oil wrap I realized that my arms were not throbbing and the pain had receded to almost zero. AMAZING I thought as I rolled over and went to sleep without another thought. In the morning, I awoke and found that the pain was gone. I took the wraps off and returned them to their baggies and replaced them in the freezer. Since then I have been using them for a variety of different pains and teaching others about the wonders of castor oil.I want to share one other story that proved to me that this was in fact a wonderful remedy that was a hidden treasure. I went out to see a new client. She was Hispanic and monolingual Spanish. I had with me my sidekick apprentice Nurse who also was my interpreter. After 15 minutes of trying to get an evaluation and assessment done, I suddenly stopped and asked the interpreter to ask the client why she was so restless and why she kept getting up and pacing. At that point the client picked up her gown and showed us the giant plaques of her psoriatic lesions. They were thick, beefy red and bleeding in some areas. They covered her thighs, abdomen, lower back, neck, and into her hair and also on her arms. She said they itched so bad they hurt. She had not had a good night sleep in months and neither had her poor family. She was beside herself. She could not sit or lay down for long and she spent most of the day and night just pacing and scratching. She had a shoe box full of empty orpartially used tubes of prescribed medications. She said nothing worked and if it did there was not enough in one tube to treat all the lesions and besides the cost was prohibitive. So she stayed home and suffered in silence.
I told her I had something to help her if she was willing to try it. She said she would try anything. So I went out to the car and returned with a 16 oz bottle of castor oil. I told her how to use it. Just apply it like a lotion to any area that itched or was painful. We arranged for another appointment one week later. When we arrived at her next appointment she met us at the door grinning from ear to ear and asked if we had any more of “that oil” as she held up her almost empty bottle of castor oil. She said that after applying the oil the itching subsided in about 15 minutes and she would apply it again when it started to bother her again. This was the first time she had any significant relief, and she slept a full night for the first time and her family was very appreciative as well because now they too could sleep through the night without waking up to her pacing and moaning. Three months later her psoriatic lesions had completely healed leaving only pink new skin and she was a new woman.
I have used the castor oil packs for headaches, toothaches, neck pain, knee pain, hand and wrist pain. I have applied it to bug bites with great success. And I have used it as a massage oil on others and myself.
Instructions for Castor Oil Packs
•Castor oil (expeller pressed or cold pressed) (4oz bottle)
•Old wash cloth/ small hand towel or flannel ( needs to be soft and absorbent)
•Sealable plastic baggie
Preparation of Packs:
1.Pour castor oil over the cloth and rub it in until evenly distributed and worked into the cloth. Cloth should be saturated but not dripping.
2.Fold cloth and place in plastic bag and close seal
3.Place in the freezer until ready to use (packs will keep for months in the freezer but will turn rancid if left at room temperature)
4.Replenish Castor oil to cloth after 1 week of continuous use.
1.Remove from freezer
2.Remove from baggie (cloth will be stiff but pliable)
3.Wrap castor oil cloth around any painful area
4.Cover the oiled cloth with another hand towel or a plastic wrap to prevent oil getting on clothes or furniture.
5.Leave on the area at least 1 hour and repeat in 3 hours if pain is still present
6.When done refold the cloth and replace in baggie and return to Freezer for the next time you need it.
7.CAUTION: DO NOT HEAT THE CASTOR OIL PACK IN THE MICROWAVE It might cause a fire.NOR PLACE A HEATING PAD OVER THE PACK. It may cause a serious burn to the skin.
8.Instead you can heat a rice bag or a damp towel in the microwave for NO MORE THAN 2 minutes. And place this over the castor oil wrap.
Apply for 1 hour every 3 hours or until pain subsides
Repeat every day for 3 days then stop for 3 days and then repeat the cycle again.
Alternate Application: Use as a massage oil. Use about a dime sized amount at a time as the oil is very thick. Massage into any painful or achy area on the body. Massage in well until it is absorbed into skin so that you can put on your clothes without fear of getting oily residue on your clothes. You can repeat this as often as needed. Recommend 3 times per day
Castor oil has analgesic properties as well as anti-inflammatory properties.
It is also useful in pruritus (itching) from a variety of causes including renal failure, dialysis and liver failure and psoriasis. Also good for insect bites.
Works best on localized pain such as bursitis, arthritis, carpal tunnel, areas of local inflammation.
If you so decide to use the castor oil packs, email me (email@example.com )and share your results. I look forward to hearing about your successes using castor oil.
Tuesday, February 5, 2013
I am a 29 old Irish lady that suffers from Fibromalgia,arthritis and skin problems.In 2003 I went London and trained a a nurse and a dental nurse....But it all changed about 3 years ago.My life seem to fall apart.I started having paian everywhere couldnt sleep then would sleep for days on end.I was going my GP and was been fogged off until one day when I went see my gp there was a new one and she was brillant and I thanks my lucky stars I meet her she told me she thought I had this thing called fibromyalgia and sent to a remotologist who diagnosed me....so I had name to how I was feeling I was overjoyed BUT that was short lived.We moved home to Ireland and the GP there was horrible unsuppotive and said I should just get on with it.......I never ever will forget how she with held my tablets and treated me like I was just LAZY........So after near amonth in bed I went to an out hours gp and she got me a name of another rhemotologist..so went see him told me the same as last rhemo you have FIBROMYALGIA....so he wrote me up for load tablets.He is lovely Ia m still with him..Iended up changing GP and got the support I really needed.So now I learned to Laugh and I paint at night so here are some things I have wrote hope u enjoy !!
This is something that has been on my mind the last few days its like a flu where i live at the moment depression which is leading to suicide.I really feel depression can be very closely linked to what we all suffer from.Lets be honest our lifes change so much from the clothes wear, to the friend and family who will stick by us.I really feel this page helps us speak as honest as we can about our feelings.Things can get on top us ,no sleep,medication not working always be in pain,I know all about it last June I went on a all time low not monitoring my medication I was taking to pulling myself back from people.It all got too much and I never asked for help and lets say it went too far.It was when my partner stood infront me crying asking me why I didnt ask for help it was then I knew I had t...o help myself.And brick by brick I have rebuild some bit of a normal life.I tell people honestly how I feel,I try not tospend all day in bed even if its just getting up to talk to someone. I m very lucky I have a partner who does his best to help and suppot me BUT there are people who dont understand Ia m pretty sure there is some people on this page feel let down by friends family etc...This is were this page helps......I cant say it enough TALK,TALK,TALK.....there is always someone here that will listen and try and help and I like to think theres a lot laughing done here ........xx Take care and Talk
Right I m back :P I am here in the cottage waiting for the three little piggies to land it beside me....Weather deadlya nd very cold, by the way I have learned to irish dance ........ ....yes I can do an oul jig...I didnt even know .....it was hugh that was telling me at night my legs have taking a mind of there own they do be dancing around the bed the poor dogs are been kicked off the bed....have to laugh hugh said me all he could feel was my legs rubbing him up and down...I say he was thinking he was getting lucky....so he cuddled up beside me and next thing......he gets my knee in to the groin ....................and on that note restless legs are a passion killer !!
Love Mags x
Sunday, February 3, 2013
Age: 21. Nearly 22.
Where I live: England
Conditions: Fibromyalgia, Partially Prolapsed Disc, Depression, Anxiety, Stress, IBS (Bowel and Bladder), Migraine, Sinusitis, Suspected Gastroparesis, Insomnia...need I continue? xD
How they effect my daily life: Constant Pain. Suicidal Ideation. Panic Attacks. Anger. Can't eat properly, sleep properly, relax properly. Makes me prone to aggression. Makes me vomit for hours on end.
My medical care: Intermittent at best. Diabolical at worst.
Do they treat me fairly? Questionable. Up until the last couple of years, I was pretty much written off as a hypochondriac with mental health issues. Had to be suicidal before they put me onto anything stronger than OTC painkillers. I literally asked my own mother, at three in the morning, to crush all my pills into a glass of water and let me drink the lot. That's the point I got to and it STILL took months before any actual progress in my diagnosis was made despite me being with the local Chronic Pain Team since 2008/9. Even with my diagnosis, after a few months I was deemed to be able to cope on my own for the most part without any outside support and I was informed I had made one of the quickest 'acceptances' of my situation they'd ever seen. I'd been suffering for eight long years with no straight answers. Just theories and excuses-the relief to hear the words 'You have Fibromyalgia' was unimaginable.
Any unconventional treatments you use? Wouldn't call them 'treatments' in the traditional sense but Alcohol and Smoking are two of the main 'consistencies' in my 'personal' treatment plan. Judge me all I want but it's the sense of control I get from them. I can decide to have a drink or have a cigarette whereas I don't get to decide on the mind altering agony and distress my conditions cause. I also taught myself to walk again by going out with my friend and her two year old son. At first, I'd have both of my crutches but would pop them on the pushchair and use that to support myself, then I dropped it to one whilst still using the pushchair to support myself, then I'd leave them in the car and only use the pushchair. Then one day, my friend's little boy wanted me to hold his hand as he toddled around the town. Seriously, you can't say no to this little guy's face so I left the pushchair and went to take my stick...he pushed it away and just told me to hold his hand. He'd stop and watch me walking and stopped when it seemed like I needed a break but he'd encourage me to 'toddle' with him, squealing encouragement and babbling away happily.
If it wasn't for him, I'd probably still be struggling to walk without aids. Sure, sometimes I need my crutches or my wheelchair but it's less frequent. To be honest, he was more use to me than the months of physical therapy I'd been through. He had no reason to criticise or make me feel inadequate-I'm just his Aunty JoJo with the funny legs that needs some help sometimes.
What hobbies or activities are you still able to do? Reading, Writing, Studying and Researching. That said, I'm no where near as competent as I once was. I find it difficult to concentrate, fall asleep easily and find it hard to find the drive to do any of them anymore...which is most definitely an issue at college.
Any advice to our readers? Try Cymbalta. It has been a miracle drug for me. Obviously, I know drug treatments are a minefield for Fibromyalgia patients as what works for one won't work for another but what have you got to lose? And Domperidone. I'd still be living off Pickled Onion Monster Munch, Peperamis, Strawberries, Mini Iced Ring Doughnuts and Pepsi without it.
Anything you'd like to add? Try and accept that life isn't going to go back to the way it was but do not for a MOMENT let anyone make you think you're not allowed to grieve for what was and what could have been. You are effectively suffering a bereavement. The loss of your former life for your present life. It's going to be hell, and there are going to be some days when your brain is telling you that enough is enough, but if there is anything-anything at all that can make you think 'You know what? Let's see how tomorrow is' even if it's just a bacon sandwich the next morning or a chat with a friend, try and hold on to it.
If it's still bad in the morning...I understand.
Wednesday, January 30, 2013
My surgery went well. But my nurses wouldnt give me my pain pills, saying i was in pain because i needed to have a bowel movement. When i explained my Dr had me do a colon cleans & that i hadnt eaten a thing since, i was then told it was from gas then and either way i needed to get up and walk.
When on the morphine drip when i first came out of surgery i told them that i was itching horribly from head to toe. They told me i was probably allergic to the soap they washed the bedding in. When i inquired as to why the itching only happend after i pushed the button, i was given the same answer - the soap. I told my Dr the next morning and she immediately changed me off the morphine and the itching ceased. I had a roommate, the nurses and cnas were all but running to answer her call bell. She mustve had great insurance, because i was on state insurance at the time and my call bell rarely was answered. So bad to the point where my roommate would push Her call button & tell them to check my light cuz i needed help and not getting any. She was a nice lady.
So i called & asked my husband to pick me up a day early, i just couldnt take the lack of treatment going on.
When i went home i was under orders to rest. HA! my baby was 2yrs old, his brother 9. His brother has always been a difficult child. The day after i got home while i had fallen asleep, he went in the back yard and tore apart the club house my husband was building with him. Plywood laying all over that side of the yard. He then carried his baby brother, who was in nothing but a diaper & no shoes, to the center of the mess surrounded by nails. He then came and told me his little brother was in the back yard. I told him thank you & went to grab the toddler. I was in complete shock when i seen what christopher had done. I told him to go grab his brother, i wasnt supposed to lift over 10lbs and he got the baby Out there fine. Anyway he tells me no, then ran into the house and locked the slider door and the front door so i couldnt get in with his brother. He came back to the slider at some point when i went to rescue the baby, i also noticed my cell was in my pocket. When i got back to the deck i set the baby down and looked up to see the older one looking at me and holding a steak knife to his throat. **please know this was not the 1st time he had done this and we had him in 3 differemt counceling programs at that time** i told him if he didnt put the knife away i was calling dad and he can deal with him all pissed off. My kid said Fine! So i called my husband and told him what was going on. I had wrapped the baby in my hoody and kept an eye on the boy inside. I informed him that his dad just started his truck to head home so this was his last chance or he Would be spanked. He threw the knife on the table next to him, flipped the door unlocked & ran lickity-split to his bedroom.
I told my husband we were in and i got of the phone. I took baby to the couch and turned on sponge bob, then went back to his brothers room.
The closer i got to his room, the louder the banging got. I entered his room right as he put his foot thru his lizards Glass aquarium, slicing his heel wide open. As i picked up the lizard i yelled "what is wrong with you!?", he just kept glaring. I bandaged him up, and he calmed down. I never did find out what the reason was for that outburst, maybe there wasnt one. Then i called his therapist to report what happend and after that i called my husband to let him know what had happend & that the storm had passed for the moment.
My husbands mother had come up to help, but had left the day before this happend.
Two weeks later my hyper high maintnance sneaky bad idea havin never sleeping niece came to stay with us. Considering i was still recovering, the agreement was that i was only to have her while my mother was at work. I already had my hands full with my son. This was not the case. We had her with us 24/7, my mother flat out told me the child was too much to handle...she really was a handful!!...but i wasnt in a position to deal with it either. But that didnt seem to matter. We had her for 6 months. (SIX!!) it was suposed to be work hours for 2weeks. Thru xmas and her 2nd birthday we had her. We had a joint party for her and my youngest who was turning 3, as their bdays are only 5 days apart. We celebrated at chuckie cheese. Both xmas and the bday party my mom got video clips of, which i thought was cute...at the time. She had my brother convinced that SHE had my niece & SHE threw the celebrations (my brother & his wife were in Tn dealing with court stuff, thats why we had my niece in oregon). I sent him pictures and told him numerous times, his friends told him, our family members all told him...and to this day he doesnt believe it. He says " why would she tell me that if she didnt have her?" Ummm.,moron!:(
My brother moved back first. My husband took 2truck loads of my nieces things over to him and our mother, you would think it would have been a tip off to my brother that my mother had duped him, and that i was not lying afterall...but nope. He wont believe it! Anyhoo, i had agreed to do daycare for him, keep my niece all week and then he came and picked her up on the weekends. He paid me once, then asked me to fill out a paper so he could get daycare payment help from wefare. I did, but was turned down for not being set up in a completely childproof home. I told him this, the next time i was owed money i was told to call welfare.
We also found out i was vitD deficient, i couldnt get out of bed one weekend:( my level was 10, and i had to get a super dose.
Then we got the news about his wife planning on moving here too with my brother and my mom. She also to this day does not believe i had her daughter 24/7. Idiot woman! But in 6 months she only called twice!! to check on her baby. Already everyone had big plans for me to take her job hunting & take her where she needed to go, because i didnt work so that meant i was free to be their taxi i supose.
My husband had had enough. He decided it was time to move away. My health was declining & they didnt seem to notice or care. His mother lived 3hrs away in a small town, her health was no good & she needed some extra help and didnt have anyone to help her, so we decided we would move by her. And then he could help her when she needed it & i could get back to taking care of me and hopefully get better. My family was not happy however, as it was inconvenient for them, we told them a whole month before we moved to find different daycare. They didnt. They bitched about how they didnt know, and how one of them was going to lose their job, even asked me if i would take my niece With us just for a couple weeks to get the wife there so she could watch my niece! My husband told them no. Enough was enough, and i love him for that!:)
That move was in 2009. Since then i have been to numerous doctors about my all over pain. It was getting worse rather than better. I hurt down to my bones:( the doctors would do all sorts of bloodtests, but everything always came back normal. I was told all sorts of blow off answers. Even told at 30yrs old that i needed to accept the fact that we all hurt more as we get older! I was like REALL!?! AT 30!?! not even... Ive been told the reason my back hurts was from carrying my fat baby, then because all young moms have low back pain, Then told it hurts because im too skinny! I now know i have a double curve scoliosis at about 30% curve & some disc degeneration:( You would think any one of the doctors i have seen would have picked up on that. But i just found out last september!
My stomach issues worsend as well. Forever being nauseus, spareatic vomiting out of nowhere (i used to have to carry a puke bag 24/7), and the pain from my chronic constipation being blamed on not drinking enough water (even though its ALL i drink!) with my tramedol. the pain was excruciating. I would feel like something kinda sharp was being dragged through my guts, my entire body would sweat profusely and make my hair drippy (ew!), and then the vomiting would start. This would happen a few times every morning, then usually i would take a warm bath as soon as i thought my stomach could handle it and that would help it calm down enough so i could smoke some medical marijuana & hold down a couple of nausea pills.
One morning in May my mom had come to stay the night & my bestie was remarrying her husband of 10yrs that afternoon and i was supposed to b a bridesmaid. But the vomiting and stomach pain would not subside. My husband checked on me while i was yet again stuck on the potty, folded in half and dripping sweat. He went and asked my mom to check on me. She talked me into suffering a trip to the ER. I weighed 217lbs at this point.
They admitted me, i missed my besties rewedding;(. Poked, prodded, xrayed & drew blood. Summed it up to an intestinal flu and after 3 days sent me home.
Things were pretty uneventful, although my oldest son was being a handful..13...ugh lol! I was working on being able to eat again and we started making plans for camping. Also i got great news that a couple of my pain drawings were accepted and being shown in an art gallery in portland, oregon! I was so excited! My first art show! July 6!
July 3rd was my 2nd admittance into the hospital for stomach pain and uncontrollable vomiting.more poking and prodding by a different doctor. This time they said it was being caused by the stress of raising my difficult child and from being stressed about my chronic fibromyalgia pain. After 5 days when i could hold down jello they sent me home again.
La dee da life goes on...
October i switched to the doctor who treated me in the hospital, and made her my pcp. I went in to see her to discuss my medications and i asked her to send me for an mri. She told me we need to think about & accept the fact that this was probably as good as it was going to get;( i told her my medications werent working well for me & she offered me methadone! I said noooo... Im scared of that crap!! So i left that appointment feeling sad & hopeless. Thats a pretty dreary outlook for someone only 33yrs old:(
A week later i was back in the hospital. Excruciating stomach pain & uncontrollable vomiting. My primary doctor was out of town, the doctor who did see me all but accused me of Dr jumping and sent me home. The next day i was still sick, so my husband called that dr who seen me the day before and asked him what to do. He said to wait until he came on shift at the ER at 7pm. So we did. His demeanor was much kinder and he was much nicer to talk to. He told me that he was going to admit me and try to figure out whats going on. Here We Go Again...
Bloodwork every 6hrs, more imaging, lots of saline & anti nausea meds. Three days later the dr comes in and tells me he thinks that my pain meds (i was on a lot at that time) was causing me an iliac, a temporarily paralized spot in my intestines. So nothing could go through, causing the stomach pain and vomiting. He said he wanted to keep me in another day or two to be sure.
Two days later my vomiting had ceased, the nausea had not yet however. I was able to eat jello and hold down water & juice. The doctor came to see me again and said he wanted to keep me another night just to make sure he isnt sending me home just to get sick again and be right back in. No problem for me!
He also kept me the next night lol! And he changed my meds and took some others away to help prevent the iliac from flaring up again.
I was down to 123lbs. Almost 100 pounds lost due to all my sickness. :(
To date i have not been back in the hospital (knock on wood quick! Lol!), i still have chronic pain from my fibromyalgia and scoliosis w/disc degeneration, and my stomach still hurts in the mornings but not making me pour sweat, or anything at all like i was having before, and the vomiting only seems to happen if my meds are making me too nauseus from an empty belly, but it has been controllable and not so bad that i have to carry a puke bag anymore.
I still have health issues, i have made that dr from my last stay my pcp, and we are learning how to manage them. He also got my state insurance to cover physical therapy! Its a miracle!!! Lol!;) i get to feeling frustrated and hopeless and he helps make that better too. For starting out as a jerk, ive found im pretty lucky to have him for my doctor. ;) hes not going to over dope me like my last doctors did, instead hes trying to Help me.
Ok, im not sure what else to write other than saying to the reader to take it day by day. Its a struggle. God gives his biggest burdens to his best angels!
Tuesday, January 29, 2013
So what is wrong with me? Well, I landed myself in the hospital for 22 days in 2010 due to spinal meningitis. Now two years later I have fibromyalgia, multiple scoliosis, restless leg syndrome, chronic headaches and migraines, anemia, insomnia, Hashimoto’s thyroid condition, and a few other issues on the side. They do not know where I got the spinal meningitis nor do they know why I have had these issues as a result. As of recent, I spent five days in the hospital that resulted in two units of blood, two bags of iron, vitamins, antibiotics, and fluids. Now, they do not know why I am losing blood nor what could be causing the iron deficiency. Regardless of how I got here I am here and learning each day to fight my fight.
I commonly get asked if I work or better yet why do I not work because I do not look sick. I have not returned to work since I was hospitalized in 2010. I am officially “retired”. I am lucky enough to be a Mommie and Wifie who does not have to work full-time. I do own Kelly Kreative which a marketing and public relations company and recently started Kreative Girl Designs which a kreative design company focusing in jewelry, hair bows, and tutus. I also write regularly and am looking at expanding some of my work even more. I am simply not able to work time in the capacity I was prior to getting sick. I go through more days of “sick” than not. Most people do not understand what it is like to go from working full time plus living the life that I thought I wanted to suddenly have it all end in the blink of one eye. However, looking forward I absolutely love my life (minus not feeling good) and am so thankful to be where I am now.
In looking at my medical issues, they have impacted my life in so many ways. As many of you know battling with the same conditions I do that each day is different. I have my great days and I have my days I would rather go to sleep for a long time. I have stopped four wheeling, riding quads, and even working out. I do yoga as much as I can because I have noticed a positive effect when my restless leg syndrome is really bad. I do push myself to keep up on household chores like grocery shopping, cooking dinner, and laundry. We do still like to travel just accept that I will need a nap or five and a few extra days to recover from the trip. We do not always make plans but rather go day by day, one so I do not disappoint others and to allow myself to heal rather than be upset if I cannot do something. I am very blessed with a Hubs who understands my fight and is supportive. Life has changed a lot from my wild days.
Medical care is a completely different story. When I “retired” I lost my health insurance. In Arizona, I do not qualify for state health insurance because I do not have a biological dependent child. So, I have gone two years without health insurance. So, my medical treatment is my usual pain management appointment to show that I am disabled and the cheapest medication. I am not treated differently because of my conditions but rather less quality treatment because I cannot afford the good stuff. Luckily that has changed. I now have health insurance and my medicare is starting in March. I am slowly adding in new treatment based on all my conditions and what is most important at that time. I have an incredible pain management doctor, Dr. Abram Burgher. In addition to my pain management I also see an awesome doctor, Dr. James Tuggle. He focuses in the utilization of vitamins and minerals to assist in my daily living. He is actually the one who figured out I was losing blood. I have been seeing him for years for vitamin therapy via injection. He has done a lot of work with me on hormones, vitamin deficiencies, and “non-traditional” treatments. It has made a huge difference in my life. Finding a great team of doctors really makes a big difference.
Although my battle is young compared to most I would say to those of you who struggle to keep focused on the good things. Make sure you develop a supportive network so when you have your bad days you have someone to lean on through those moments. Take the time to find doctors who understand your struggles and are willing to listen to you. Yes, there are doctors who listen to you and treat you as needed not just based on paper. If you get a bad feeling from a doctor do not continue your appointment or do not go back to them. (Ask my Hubs, I walked out of one doctor’s office because she refused to listen.) Be willing to read, learn about your battles, treatments, ideas, research, medication, therapy, and so on. I go to the doctor with a list of ideas or questions. I question everything. Remember that you are not alone. This is a true fight. If you need someone to talk, reach out to someone special (or me). Also, push yourself. I know you push yourself every day. Find something to push yourself on or for because it helps give you purpose.
I hope you laughed while jumping on board my mind for a while. I am always around to ask questions to or to talk to. I will be thinking about you!
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Every day I hurt. Every day, I am tired. Not like the good kind of tired where you have worked hard all day and you feel satisfied and fulfilled from a job well done. No, this is the kind of tired where you sometimes have to stop and sit down while you wait for the elevator. This is the kind of tired where you sit down on the couch to have a snack and realize you forgot your drink and think, “Dear Lord, how bad do I want that drink? It’s all the way over there..”
My new “normal” has become pain, fatigue, and guilt. Why the guilt? Guilt because I can no longer be the mom and wife, friend, daughter, sister, etc, I used to be. I cannot run around the yard and throw the football with the kids because I hurt, and the activity will make it worse. Guilt because it takes all I have to “give” at work all day, and I “give through the pain and fatigue and well, by the time I get home, I have little to nothing left. Guilt because I take medicine just to feel some kind of normal, and I don’t really “believe” in medicine. I mean, what kind of a hypocrite am I? Guilt because church attendance has become another chore (which doesn’t get done), something that my body just cannot get on board with because, uh, you guessed it by now, pain and fatigue.
The new question has become, “Is this what my life is going to be like?” And, “Is this not just a little flare? Is this it? And, how much worse is it going to get?” Another doctor visit, more tests, and more, “Here try this medicine.” Another medicine I have “failed” at because the side effects debilitated me more than the pain itself and didn’t fix the pain, anyway. Another wish to cry out to the doctor, “Do you have ANY idea how much this hurts? Every day? All day?” And, no I don’t want those other pills, the ones that have all the atrocious side effects (like lymphoma, for example).
And, then, the realization sets in…they cannot help me. I am on my own. The doctors can’t fix this. Silence…Where is my hope? I need hope…And then, “ I lift up my eyes to the hills–where does my help come from? My help comes from the Lord, the maker of heaven and earth.”Psalm 121:1-2. I pray, I cry out to God and ask for wisdom. I claim His promises for me. He promises not to withhold His wisdom from us when we ask. In fact, He says he will graciouslygive it to us.
And, I recall learning about a wonderful Integrative Medicine doc…I have hope restored, not just in the doc, but in the God who reminded me to go in that direction. Despite the pain that is still there, burning, throbbing, reminding me of its tenacity and power, I have hope. Hope in a God who is bigger and more powerful than my pain. Hope in a doctor who is carrying her God-given purpose on this earth. Hope for His plans to prosper me and not to harm me, plans for a hope and a future. Hope that says, “He never would allow anything to come upon me that He did not plan to use for my good and His glory.” I WILL trust in Him! I WILL press through the pain! I WILL believe that on the other side of this, there will be beauty. There is beauty in the suffering, for it is through the suffering that we come to know Him better, love others better, and know that Christ’s power rests in us to do ALL things through Christ who strengthens us.
So, though I am not cured instantly, not set free from my affliction, strangely, I have a little more peace knowing that He gave me HOPE. He has not forgotten me. He sees every tear that is shed and He has saved them in a bottle (Psalm 56:8).
My new normal is not normal, but then, nothing is here in this fallen world. This is not our ultimate destination. But, thank God, we have the hope of the life that is to come, and we have His loving hand to hold as we journey through this world as well as opportunities to love others who are suffering as well. There is purpose in the pain. I WILL push through it to the purpose, even if I do not learn of it until I cross to the other side. He will not let it be wasted. I have hope!
Hope (Photo credit: bitzcelt)