Tag Archives: degenerative disc disease

Some funny title goes here

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I had this whole post planned out in my head. I planned to write it on Sunday. Fibromyalgia and arthritis just laughed and laughed and laughed and said “No”. So the post that I have in my head will stay there a bit longer.

Here is this instead, how to shut Fibromyalgia and Arthritis up in three oz. It is not necessarily tasty.Think of it as taking a shot of alcohol. Some really nasty alcohol but the idea remains the same.

What you will need: A juicer

1 lemon- use 1/4

some ginger root – 1/4 inch

four to five pieces of Turmeric root

About an inch slice of cucumber

About two inches of celery(not pictured because I added it last minute)

three cloves of garlic

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With in twenty minutes my pain levels were noticeably less. I don’t think an hour ago I could have even typed this much.

Ebb and flow of parenting with chronic illness

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One thing that eludes me is consistency. Some of that is A.D.D., some of that is just life.  Chronic illness doesn’t really allow for consistency. It is super annoying.  It bleeds over into parenting. When my illnesses are flaring or acting up, I tend to slack off on parenting. I know I do this.I hate it.  I dislike how much TV she watches while I lay in bed. It takes energy I just do not have, to keep on top of her.  I want to always be that mom who is fully involved and happily multi tasking making dinner while the kid is doing homework. It is just not realistic for this to be happening daily though.

This morning  Actually it started the night before, we did homework for hours. Why hours? Because I was resting. She was supposed to be sitting at the table doing her homework. I could hear when she got off task. I made sure to point it out to her. When she was crying for like the fourth time I told her to pack it up. We would finish it in the morning. She is a horribly early morning child  anyway so why not. This lead her getting up an hour earlier than normal,because she was worried about not having enough time.  Between slurping coffee and getting really frustrated she is not focusing. The guilt starts. The guilt that I should have been more on top of this. I should have. I should have. I should have.  This is what goes through my head. I know on one hand, that I could have done things differently. Then again, she is nine. She is old enough to be responsible for her homework.

It’s not like I don’t know it’s coming. It’s not like I don’t know its due. It is more like, It just gets set aside in the hurry of every day. We set it aside because this came up or that came up. We set it aside because I am not feeling well,  we will do it tomorrow. I will feel better tomorrow because I rested today and I am going to take it easy tomorrow. That by the way never actually happens.  Then suddenly it is due tomorrow.

We get her homework packet Thursday after school. We pour over it like it’s the newest gossip magazine. Look how many pages of math! Oh, look you get to do this! I have an idea for that! We really do plan on tackling it. Thursday we are good about filling in her reading log, including the summary of what she read. We mark down what flashcards she did in Math. Friday, we normally have a family treat. However on the way there I normally make her read her book. There is a fifty-fifty chance it will get written down when we get home.   Saturday, sometime after I arise from the abyss of sleep, around eight am I look at her homework packet. We might even tackle some of it.  Then the outside is calling because it is fall in Florida. It is splendid weather outside. Not cold, not hot, windy but not windy to make it miserable.  In other-words, paradise. Sunday morning is out because church. The next thing I know its Monday. When I pick her up it’s all gusto. We are going to get it done. She reads. She does math. I am knee-deep in making dinner.  “Yeah I don’t care what you do. OUT of the Kitchen!” We have tomorrow. We will knock it out tomorrow. You get the picture.

Sometimes at the end of the day, I think “yup, nailed it today.” I got work done. I got the kid fed,to school-fed and in bed. I took time for me. Go Me! Then there are other days that at the end of the day. I think : ” Well breathing was really hard today.”

I think sometimes us chronic illness sufferers give the wrong impression about flares. Sometimes, it really is a flare and we never even saw it coming. We went to bed. We woke up having a new sympathy with road-kill. Most of the time though, it is not like that. I have weeks where I really feel on top of it. I have medicated at all the right times. I haven’t pushed the limits too far. I have eaten healthy and slept decent and taken personal time. Then it slowly starts off. By slowly I mean like from one day to the next. It just slowly one thing after another stops working. The medications are not as effective. I have more muscle aches than joint aches but I am still treating for the joint aches. Maybe what I did one week didn’t push the limits, so I do it again the following week. Uh oh. Limits reached and exceeded. What? I just did that!  I ran later than expected grocery shopping or cleaning so I had less me time in the car waiting to pick her up. It just slowly builds. Those kinds of flares are easier to recover from. It is like a light goes on and I am able to fix things. I start medicating  right. I give a little extra self-care. The times that it just WHAM! BAM! No thank you Ma’am. Those times we dread because so much of the time, we have to wait it out.  I can try to medicate. I can try to listen to my body and see if there is some craving it has. Most of the time, it is waiting though.

How do you parent when you feel like that? How do you parent when it’s not consistent?

You learn to go with the ebb and flow of your illness’. You learn to ebb and flow parenting. You learn to take advantage of when you do feel good.

I am still working on it.

The real cost of being sick

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 There is so much more to chronic illness expenses than doctors appointments, tests, and prescriptions. Those are the more obvious expenses. Those are costs that you can control to a certain extent with the type of health insurance  you have. These are some of the less obvious costs…

Lets start with diet.  I don’t mean the kind of diet you go on when you want to lose weight. I mean the kind of diet that completely changes how you eat. I won’t say that I avoid trigger foods altogether–I am human. I know [emotional? you just said “eating” which is good!] eating it is not the best idea, but sometimes it’s emotional therapy.

Many times the prescriptions that people with chronic illness take can cause digestion and gastrointestinal  issues as well. What that means for me is I can not rely on a good quality multivitamin to catch any lapse in diet. A good quality highly absorbable multivitamin can cost fifteen dollars or more per month.

The reality is fresh fruits and vegetables cost almost twice as much as canned or frozen fruit. Why is this an issue? Well this ties into the digestion issues. Many people with chronic illness cannot process the additives, extra sugar, processed sugar, and preservatives as well. This makes canned and frozen fruits not the best choice. I am not saying I never get these but its not my preferred choice, and I always have more issues after eating these foods.  I am lucky in my diet the only issues I have are preservatives, additives, lactose and corn.  This still makes it difficult, it could be so much worse.

While my family normally tend to be fairly healthy eating to begin with even before I got sick, it’s not even a choice now. It is how we have to live.  This is not necessarily a bad thing, just another hidden cost people don’t think about. I did do about six weeks of juicing with fresh fruits and veggies. It worked really well, and I did feel better. It cost me  about forty dollars a week. When it came down to it, I had to start focusing on making sure my family had enough groceries for the week and not just enough to juice.  Its great to juice or make smoothies, but I still have to feed my family.

Next we have what I like to call my toolbox. A list of things that you can do to help alleviate some of the chronic pain that goes along with chronic illness. Oh just take an Epsom salt bath every night. I use Icy hot and love it. Pick up some Tiger Balm. Pain patches, supplements, and exercise are what helps me.  It is one thing to say that but here is the hidden cost.  To be effective you need to use at least a cup of Epsom salt per bath, while recommended amount is two. At one point in order to take a just plain Epsom salt bath every night I was paying roughly fifteen dollars for salt each week.  This is just plain epsom salts. This was not for the ones that have added benefits of lavender or menthol or eucalyptus, rosemary or ginger added to them.  Not to mention its not like I can just jump into the bath tub any old time I need to.

Then you also pick up a variation of rubs, creams, and ointments. Each of these run from as cheap as five dollars up to twenty  bucks each. Since we often use them multiple times daily, we might get a week or two out of a tube or bottle–if we are lucky. Pain patches, however wonderful they are, are one short use and they are done. Five dollars for five patches that if you stretch it can last you four days. It gets to a point that you can easily be spending fifty to sixty dollars a month on these kinds of things.

There are some more natural remedies that you can take to help bolster the prescriptions that often you have to take. I have gone off a lot of prescription medications and have gotten down to my bare essentials so to speak. My bare essential prescription cost is about  [$150] {or} [One hundred fifty] every three months.  It was almost that a month at one point in time.

It is easy to say “go pick up a supplement.” Looking at quality matters a lot here. Turmeric, which is great for chronic pain, is a minimum of ten dollars for a month supply. Then often people in chronic pain use Magnesium which can be relatively cheap, again the type and quality counts here. The one I have had the best success with is fifteen dollars a month. I use a strong omega three supplement as I have both heart issues and mental health issues, and that helps with both.  I also take Melatonin as opposed to a prescription sleeping aid.  It is not hard for me to spend fifty dollars or more on supplements [a month? how long?]. Fifty dollars is where I am at right now with just the basic cannot-do-without supplements.

This is really just the first layer of unseen costs of being chronically ill.  This is not even taking into consideration that the kind of mattress you sleep on matters, keeping shoes fresh and supportive by changing them out every three to six months.

This does not even take into consideration that people that have chronic illnesses tend to not be able to work but yet not meet the terms for disability through the government.  I am lucky I have decent insurance and my costs are low comparatively speaking. Shockingly enough, to many the answer is not through medicaid, I actually paid more and struggled more going through the medicaid system.  The stress the system puts you through to jump through the hoops to get what you need……it’s unbelievable.  Even with the good insurance we have now my out of pocket expenses are anywhere from 100-150 a month. This is not including prescriptions that are significantly cheaper with insurance.  This is what I have it boiled down to as essentials. It could easily be twice that.

I often deal with people who are very flippant about my chronic issues because they are not visible nor are they the same from day-to-day.  To date my diagnoses are: Myofascial Pain Syndrome; Chronic Fatigue Syndrome; Fibromyalgia; Degenerative Disc Disease of cervical, thoracic , and lumbar spine; Irritable Bowl Syndrome triggered by a corn intolerance; Supra-Ventricular Tachycardia;  Raynauds; malabsorption of Vitamin D, Potassium, and Magnesium; severe outdoor allergies which borders on allergic asthma; OCD with tendrils of ADD.

I don’t look sick. I don’t like to talk about being sick or what I can or can’t do. If I am discussing it in detail with you, I trust you a lot.  I am not willing to continually prove my conditions to people over and over. What would I do to do that? Carry X-rays and MRI reports and blood test results around with me constantly? I am not being lazy or taking the easy way out and yes I can read that in your eyes. After dealing with Doctor after Doctor after Doctor who did not believe me, I can tell exactly who does and doesn’t believe me. Some of the disbelief comes because I was super active and really did a lot one day. The next day it takes everything I have to get out of bed. I am paying for being so active. When you have a kid, you tend to push yourself to do more, for them.

I have gone through the disability process with the government. Essentially they believe I have the issues I have but because I can parent to some extent and function to some extent, I am not disabled. What I was doing when I was working and trying to parent was not functioning.  I was a mess. I could not enjoy any time with my daughter. I focused on getting through the day til I could medicate and hopefully sleep. I had no quality of life, not to mention the immense damage to my organs that the prescriptions were doing. It has taken two years off of three medications to get my liver and kidney functions to somewhat normal levels. TWO YEARS.

It has been a long hard road to get my health back to some extent.  We are lucky that we have family and close  friends who understand and help us. We are functioning, barely, at a fourth of what we were earning when both of us worked full time, and this is with my husband working two jobs to help support us. If anything ever happened and he could not work, we would be completely screwed.

************************************** some exciting news in store***********************************************************

 

Below is a brief outline of the campaign, which illustrates what we’re trying to achieve and how people living with chronic conditions can help.

 

Via the “Hidden Cost of Chronic Illness” campaign, Debt Advisory Centre aims to raise awareness and visibility of the challenges faced by those living with chronic and ‘invisible’ conditions. We’re also conducting our own research into perceptions of chronic illness, especially in relation to the work environment.

 

 

We’d like to know the following about the patients that use your services;

 

  • How long they’ve had their condition.
  • What their specific condition is.
  • How it affects them (professionally, socially, emotionally)
  • What things they have to purchase in relation to their condition.
  • What other financial disadvantages they face.
  • Roughly how much they spend per month in relation to their condition.
  • How they feel others perceive their condition (employers, friends, strangers)

We’re keen to gather as much user-generated content as possible and welcome contributions via email and video.

 

Once we’ve gathered the information, we’ll combine it with research we’ve conducted ourselves and research supplied by other organisations ourselves. We’ll then be distributing and sharing those findings with the media.

 

Patients can find out more by visiting the campaign page http://www.debtadvisorycentre.co.uk/advice/Illness-and-Debt-What-are-the-Hidden-Costs-of-Chronic-Illness-0-4163-0.html

 

Please note, if you aren’t already aware, that Debt Advisory Centre is a fee-charging debt solutions provider and not a charity.

 

Never a normal doctors appointment

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Friday mornings are my roughest. I am so ready for the sleeping in on Saturday morning that sometimes happens. If it doesn’t happen the staying in bed a little longer happens. Most of the time.  Having a doctors appointment on a friday morning seemed like a good idea. I am not sure why. I know how rough I am. I got the kid out the door and to school on time. I headed to the doctors office right away because traffic is still horrible here. The tourist and snowbirds are slowly going back home…..slowly.

This was a review bloodwork and make sure my medications were all still okay. I was seeing the nurse practitioner because of a schedule conflict the doctor had. Because I can never just be a cut and dry case of ANYTHING…… my magnesium and potassium are still fluctuating still on the low side….and my thyroid is off…also on the low side…but the hashimotos study and the antibody study came back completely normal. This makes perfect sense to me, because I am used to this kind of thing. The Doctors were a bit perplexed. As I have a heart condition as well and am on medication for that, she is a bit hesitant to start thyroid medication. My heart condition is fairly well controlled with medication, however that does not mean we should take risks. If we do start medication it will be with an event monitor to make sure that I don’t have any SVT episodes(read my heart goes wacko, arrhythmia). For now we are doing thyroid level checks every three months and checking the antibodies every six months.

She was incredibly pleased with my progress on loosing weight and walking. Both of these will in the long run also help my thyroid along with my heart and other things. The progress is also why she was hesitant to start thyroid medications, afraid it will affect my heart and set me back walking and weight loss wise. We discussed diet and how juicing is helping. She was a little bothered that I only drink juice in the morning for breakfast and water. I am not a breakfast person. Unless breakfast is at ten or eleven am. She said she would like to see some grains introduced into my breakfast but since I was getting such packed nutrition from the juice she was not going to push it.  I have cut back my soda and coffee and that too will only continue to help. I told her there is one thing I do , do……the week before my period. I go with what I want, not necessarily what is healthy. We also discussed the once a week frozen yogurt. She said she wasn’t concerned because it was frozen yogurt first of all and the amount of fresh fruit I add was enough she felt the hot fudge and carob chips were an okay splurge. 

I was on prednisone for several years. During that time I had issues with skin scarring and keeping my skin moisturized enough. When I went off it , it slowly got better and went away. It is back. However she was not concerned that it was a new thing. It can take several years for skin to return to normal and will take intensive moisturizing treatments. Oh more fun. I am so horrible at remembering to do this, plus my OCD hates the texture of most of the lotion and creams.

While my magnesium and potassium oh and vitamin D levels are just slightly below level, we are still gonna keep an eye on those too. Its a relief to know that I am not taking too much because the levels I take are fairly high. It concerns me. However my body just doesn’t seem to like to hold on to those things.  Malabsorption is so tricky. Sometimes I absorb things great. Other times not so great. There is constant adjustments needed.

We then discussed the upcoming trip in August to Epcot and camping. She doesn’t see it being a problem for a low dose muscle relaxer for a week. It is one less thing for me to worry about. I can work on progress with distance in my walking. It will help with endurance. Camping and keeping up to an excited nine year old will be hard. This is just a little edge off at night to keep me going for four days.

After such a good doctor visit and leaving so pumped. I treated myself to Starbucks. Just a single shot espresso. I add sugar to it and it reminds me of Cuban coffee I used to get with my Dad. Its a nice warm fuzzy memory to set the rest of my day with. Not to mention the boost of energy and possibly being productive with housework today!

Start

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That is the key. First you have to start.
Many people assume because I go on walks, I am feeling better. It looks impressive that I walked two miles.It is impressive but it did not happen overnight. I has been over a year though since I started walking and it has been slow and steady increase.

When I first started half a mile completely fried me for the day. It was all I could do to make it back to the house.

I didn’t give up though. I kept doing it. First it was one walk every three days.. Then every other day.. then every day.

This allowed me to ease  my Fibromyalgia and arthritis ridden body  to walking. Giving myself time to deal with flares when they happen.

It wasn’t about stopping when I hurt. If I did that I would never get anywhere. You will find that there is a period of time that the walking makes you feel better. It is typically ten minutes into the walk for me. Then I can go for a bit a feel pretty decent. Then the pain returns. That’s when it is time to turn around or be heading back.

Be gentle with yourself. Fibromyalgia does not like it when we try to minimize its impact on us. Remember that you need rest after these walks. Typically there is not a lot left for me to do for the day when I take my walks. If I take them too early in the morning I am completely fried for the day.

Track your walks with a pedometer. I use an app on my phone. It helps to keep you on schedule with walking. It is also an added bonus of something to show your doctor to show you are trying.  It is also fun to see the patterns you walk on the GPS mapping part of it, at least for me it is.

It is also important to remember to hydrate yourself. If you don’t like the taste of water. I recommend chugging at least eight oz of water prior and after the walks. Remember to keep hydrating through out the day.  I have found that people with Fibromyalgia need more hydration that normal.  It helps your muscles in so many ways.

Something else that helps is having someone else go on the walks with you. When I first started out I went with my husband or my best friend, neither of them have chronic illnesses but, they know when I am pushing myself too much. Now I tend to walk with another friend who has chronic illnesses. We keep each other accountable for walking. Now we tend to walk twice a week and we are averaging two and half miles. Sometimes it is too much for me, sometimes it is too much for her. We get each other through it.

Keep playing around with it and find what works for you. It maybe that it works better for you to walk in the morning. It maybe something you do by yourself,for yourself. I promise you will find it helps in so many ways than just exhausting you.

Walking can help improve your mental state, ease anxiety, it boosts your energy levels, it increases your Vitamin D intake(since most people walk outside in the sun). It strengthens your heart and other muscles, it aids weight loss. It can also help prevent dementia and lower the risk for other disease. I also find that when I am dedicated to walking, I sleep better at night too.

It is to your benefit to get out there and walk. So get out there and just START!

 

When Judgement invades

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Stop.

Just stop.

Stop assuming you know what my life is like. Stop assuming because I don’t work that I have time for everything to get done.

It came in a seemingly innocent conversation with my daughter. Something a teacher had said to her. A teacher I have had issues with her making assumptions about me before. She said I should be matching her socks and she was tired of seeing my daughter wear mix matched socks. First of all ,  that is not how I raise my child. She is free to express her fashion sense in anyway she choose. Kids have so few truly independent choices, I choose to let her wear what she wishes. Second of all, how dare you try to to push my daughters creativity and her general self confidence down. Because whether that was the intent or not, it is exactly what happened.

I responded to my daughter and said, I don’t match your socks because I love your sense of fashion and you can wear your clothes how ever you choose. Her face broke out in a big smile and she threw her arms around me and kissed me.  How dare that teacher crush my daughter in even a seemingly insignificant way.

I am tired of people assuming what I should and shouldn’t be doing, how I should or shouldn’t be raising my child. It should not bother me but it does.

I walked off my frustration and cleared my head of this to a certain extent.

Why can’t people just love? Why?

Sticks and stones will break my bones but words will never hurt me.

If only that was true.

I look like a healthy thirty something mother who is choosing to stay at home, but I am not.  Its always hard to see the judgement in others eyes when you tell them you have multiple chronic illnesses.  If only degenerative disc disease had some outer detail. You can’t see it, but I can feel it. I wish I couldn’t. If only all the aspects of Fibromyalgia were visible to the naked eye.

The world screams to conform to what is socially acceptable. Chronic illness is not socially acceptable. That is the cold hard truth and until it is accepted, judgement is a fact of life for us. Something that is often dealt with on a daily basis.

 

 

Pacing is a must

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It is a must! As in not an option.

Sometimes pacing is:

Take the stuff out of the dryer. put the washer to the dryer .new stuff in the dryer…and lay down. Sometimes you have to lay down the entire 60 minutes that the laundry is going.

Sometimes it is setting an alarm for fifteen minutes and chipping away at the housework then setting an alarm for thirty minutes of rest.

What is not pacing is what I tend to do…..

Get up take the kid to school go clean a house, go to lunch with a friend hit the grocery store pick up the kid, come home make dinner, get the kid to do homework and take a shower and read and get in bed. At which point I collapse into bed in an exhausted pile of goo. Brain function left somewhere around dinner time. I may be ready eleven hours later to maybe contemplate getting up to take the kid to school. Maybe.

Then there are days like yesterday

I got up got the kid to school, even packed her a lunch, came home, RESTED for about an hour, then did some work on the church facebook page, got up moved laundry along, sprayed down the shower with limescale remover and a dash of bleach to the tough area, set the timer for twenty minutes, did some dishes, rinsed shower off when timer went off, RESTED for about twenty minutes or so, ATE lunch, a good balanced lunch, Did the floors, went to church meeting where even though thinking was involved it was two hours of sitting, worked on church facebook page a bit more for twenty minutes, went and got the kid from school, sat in the field while the kids played for a bit, picked up the husband, went to have frozen yogurt, went to target(where i kicked it with cartwheel) and then we went to a friends house where sitting and relaxing and talking happened, then home for dinner shower and bed. I really don’t think I was awake any more at 745. However I put my bedtime at 815 because I responded to a text then.

It was busy, It was productive but there was lots of resting times worked into it. I didn’t feel overworked or burnt for more than ten minutes at any point. I RESTED.

I would love if my days looked more like this. Productive busy but also a lot of self care worked into it.

Of course even that might have been pushing my boundaries a bit as this morning was spent mostly in bed,sleeping, however that could also easily be my med changes because I added prozac yesterday. Hard to tell which.

As a mother it is hard for me to work in self care. To schedule it into my day. It is a must , it needs to happen. Pacing is self care. It really is. I found if I scheduled it, I had less guilt about it. I was sticking to my schedule, nothing was being put off. If you have to …schedule it. Pacing is just as important as remembering to take your medications, get that bloodwork done, go to the doctors.

 If you have to, wake up earlier so that you can get up, get dressed, lay back down. get up take pills, drink coffee, lay back down. Believe me I have done this. I have been there. Days where even just standing up is exhausting.  At one point I was taking my morning medications when my husband had to go to work, at 545 am and then going back to sleep so when the kid got up at 630 I had a chance of actually being able to get up with her.

The more time we take to balance what we are doing with resting , the more productive we are.  It takes time and dedication but you can increase how long you are able to be productive. At one point twenty thirty minutes was my max before I would crash and need to rest for often hours, now I can get away with a fifteen to thirty minute rest most of the time.

Of course for those of us with multiple chronic illnesses there is only so much you can prepare for , however pacing is still just as essential, almost more so. I know I can keep my fibro pretty happy between meds, supplements, pacing and resting.  Degenerative disc tends to like to listen to barometric pressure changes more than me. However if I have been diligent with meeting my fibro needs, the degnerative disc flares are easier to handle and often less intrusive than they could be. All bets are off when IBS flares though, nothing makes that monster happy. I know how to manage it and I know when I am cheating on managing it , I will pay. It has a way of making you pace yourself though, only so much can get done between running to the bathroom.

Step into my body for the day.

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I have a new primary care doctor visit coming up.

I really dragged my feet on making this appointment.

Then I made it and I was feeling really proud of myself.

Until I realized I would have to review ALL off my symptoms with him.

ALL OF THEM.

This means I need to start paying attention again and write them down. I stopped doing that, writing them down, Because I found once I acknowledged them , rated them , they got more persistent in wanting attention. I can push past and function if I don’t really think about them.

Its not that I don’t pay attention to them. Its more like…yeah yeah I know and shove it aside. Yeah yeah I know and shove it aside. Getting things done and functioning is more important to me.

So I need a list okay. I can do a list. This is my list in progress. Its not all done.

1. Dull ache in most of my large joints and often my smaller joints as well.

     A. also sometimes my joints feel like a vice grip is on them and it is slowly being

          tightened.

     B. Sometimes popping the joint helps, often it feels really good for about ten seconds. then the ache is back. Occasionally it makes the pain dramatically worse.

2. Muscles- various degrees of feelings of weakness, often shaking and spasms. easily get a pulled muscle feeling often doing very mundane things.

3. That 18 point test for fibromyalgia……touch them and die.

4. Nervous system- often pins and needles feeling down arms. across left side of face. sciatica , Often starts with shooting pains.

5. Raynauds- cold toes. turns colors. hands less frequently

6. sleep

7. IBS

8. ADD OCD Depression

9. Degenerative disc disease

10. allergic Asthma

So that is just the start, that’s not comprehensive and there is more explanations to write out.They also want me to bring a list of all my medications. I will also be adding in my supplements.

It makes my head hurt just to see all this written down. It needs to be done and I am doing it , but its made me a bit extra whiney. I hate seeing it all written out and I haven’t even finished all the explaining.  It makes me feel stabby when I see it written down.

However sometimes we need to look at our symptoms and make sure they are just our regular symptoms that we are not ignoring something that is important. I have been bad about not keeping up with the doctor appointments for just check ups and standard bloodwork. I am working on fixing that now. Sometimes we need to take a breather from the constant doctor appointments and bloodwork. The trick is not letting it last too long.   I feel good about the medications I am on now. Perhaps a stornger muscles relaxer but at the same time that maybe something that is just a want and not really a need. In some ways I am looking forward to sitting down with a doctor and reviewing everything again. In some ways I am not. I am working on it. One step at a time.

Pushing the limits

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After six years with Fibromyalgia and Degenerative Disc Disease, I know my limits. I know I functioned in the working world for as long as I did because of the medications I was on.  It took another adjustment to get used to different medications.  I know my limits of what I can and can’t do. That doesn’t mean I am not going to push those limits. I am not about to let those limits define me as a person, as a wife, as a mother.

It requires more planning but I can still push myself way over my limits and down the other side.  There are just times that its worth it to me to do this. Yesterday was one of those times.

I have a fantabulous friend that often doesn’t let me be stubborn. However I won on this day to clean up the back porch and decorate. Yeah that stubborn streak I have is always getting in the way. I cleaned porch chairs swept the porch got up and down on a step stool to hang decorations. Scrubbed tables and even took four kids to the store to get the cake and some last minute things.

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Seriously Mountain Dew and full strength aspirin kept me going through the day. The party was to start at two. We were literally at Publix getting the cake at one fifteen. I pulled into the Publix parking lot and before turning the car off got all four of their attention.

“I am so very serious. If I have to say something more than once to any of you…..NO CAKE. I will do this!” I looked in the rear view mirror to see four very serious  faces and head nodding going on.

No I probably would not have enforced that. It was a way to cut through their excitement and get through to them.  It was a very successful trip we got what we needed and got out of there. No Shenanigans. No Lollygaging…

I am literally only still moving by pure adrenalin for the party and the newly purchased bottle of Mountain Dew. Cracked that baby open the second we were in the van.  There was also the draw of sugar when it was cake time as well.

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The only activity we had planned was releasing playing and catching ladybugs.  I need very low key activities if I am to survive the party. 3000 ladybugs plus eight to nine children.  To say the least they were entertained.

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The Ladybugs had been delivered two days before. We learned a lot about ladybugs, we learned they hibernate in cold. The refrigerator would make them go to sleep and it took only seconds for them to start moving around again. They were still sleepy enough each child was able to get a good handful of them in their net.

It was something that kept everyone’ attention. Even the adults.

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A good birthday party indeed. It was in fact pretty low key and I was able to sit and relax and talk with other adults! Gasp!

Of course I also got to snuggle my baby, Princess P! (A friend of mine’s baby who I was honored to be a witness at her birth.)

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By the time people started leaving I was feeling the days events. It would be nice if  it waited til I was home and in bed.  I had already started medicating to try to head off some of it. Pretty much by seven pm I was no good to anyone. I couldn’t distract myself anymore.

In the end though parents push themselves to their limits with their kids, for their kids. It is just what we do. It will take my liver a few days to recover from medicating more than I normally do. It will probably take at least another week of aches and pains higher than normal before it evens out again.

Will it be a birthday that she will remember? Absolutely!  Would I do it over again? YUP…and will next year too. Really I will do it whenever it is necessary.

When I woke up this morning, at a decent hour, not the multiple times I was awake in the middle of the night. Everything hurt.  All my muscles felt like they had been used as trampolines and when I say all, I mean ALL. It hurt to sit up it hurt to stand up it hurt to walk. Medications helped somewhat. I was comfortable as long as I wasn’t moving.  Today was a service I didn’t want to miss and I had not even warned the kid that we might not go to church. So off to church we went. By the time we were done I was having visible muscle shakes and intense Nausea.

The rest of the day has to be resting and very low key, continue taking muscle relaxers and alternating advil, tylenol and aspirin. Oh and yes lots and lots of water. Not only for hydration but to help flush lactic acid and toxins from the junk food from the previous day. Today has been mostly about resting and recovering and even letting the kid have a looser leash on what she is and isn’t allowed to do today. Even working on this blog has had to be in increments as I could only do so much typing before it was too much.

I will admit I have chronic illnesses. I will admit I have limits. I will never stop pushing those limits.  Especially when it concerns my family.

Stumbling on this road called Chronic Pain

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Today I am pretty reflective….hey it happens. I look back on all the obstacles, all the tears, all the pain. You know what? Its worth it. I didn’t think it was at first. For awhile I said ,” I don’t want to get out of pain now that I know where my limitations are.” Now its more like….” If something changes…..I will just keep going….its what I do.”  Some people understood where I was coming from with the first thought, some didn’t. I now find the same applies to the second thought. This road is very specific to each person and how fast you get through each step…is completely up to you.

I look back now and wonder how in the world I managed a full time job,a forty five minute commute, being a mom, being a wife and having chronic pain. I don’t remember how I did it but, you know what? I did it. That’s what matters. When I got laid off I was not ready to give up on working. I was not ready to be labeled disabled. I would have rather been labeled a complainer than disabled. Now its barely two years later and I am ready. I know my limits, I am content with what I do.

No, not content. I am passionate about what I do get to do. I get to spend more time with my daughter. Time where I can be present and enjoy the little things. Instead of being there in person but not mentally, because mentally I was already in bed. I can sit outside and blow dandelion seeds all over the place and delight in that very specific laugh my daughter has when she is completely happy.

Marie Von Ebner-Eschenbach said : ” In youth we learn ,in age we understand.” Its hard to remember that this doesn’t just apply to our physical age. It also applies to the age of how long we have been dealing with something. When I was first diagnosed with Fibromyalgia, I wanted to absorb everything about it. Same happened with Chronic Fatigue Syndrome and Degenerative Disc Disease and every diagnosis after that. It even spread to an extent to the IBS that I had been dealing with for years already. Understanding that I am in a different age for each diagnosis I have is a hard thing to wrap my brain around. This is when I stumble….When I forget its okay not to be okay with whats going on. To not be okay that your body is turning on you, or so it seems.Its okay to stumble. Its okay to fall down. The important thing is to get back up and keep going.