Tag Archive | living

I believe

Alas, another night filled with indescribable belly pain. Knock you to your knees and beg to pass out kind of pain. Pain pills barely taking the edge off, I can’t imagine what it feels like without them….I don’t have any recourse left…no doctors that I have found to date will operate until I am literally taking my last breaths due to obstruction or peritonitis. Part of the bowel is dead. I cannot eat anything other than crackers, tea, gatorade, silk vanilla milk, some babyfood and occassional toast.

I can’t keep the bowels working normally. I take stool softners three times per day. I take probiotics and digestive enzymes. I live on Gas X and Mylanta. I take Mirilax daily. Then about once or twice per month i drink a bottle of Mag Citrate…with all of this…I am lucky to have a BM once per month…and its not anything close to resembling a normal BM.

So, what to do what to do, eh? I have sent my records to doctors in NY, NJ, FL, CA, OH…and spoke with one in Germany who has helped alot of people when other docs couldn’t…none of them feel its in my best interest (or theirs) to even attempt any surgical intervention, unless I’m already dieing. Which, make no mistake, I AM indeed dieing from this…its a slow agonizing death…but coming all the same.

Oddly enough I am at this point in my head though, where if I found a doc tomorrow who said “Hell yes I can fix you!!! No problem! Lets get you scheduled asap and get you out of your misery young lady!” There is no way in hell I would believe or trust in this doctor…so, what’s the point in looking? I’m not even sure anymore. I mean, living in this agony is no walk in the park by a long shot…but atleast I’m here…breathing…watching my kids lives…a part of it all…I can accept this, I can live this way…I’m tough as nails and stubborn as a mule, but its the fear that each increase in pain, or each day without a BM or the lack of nutrition is getting me closer and closer to death. The fear is killing me.

I have met so many strong and inspirational women online. They have become my sisters in illness. I hate that there are others who are suffering like I am out there, yet I’m so thankful to have found them or to have been found by them. I feel not as alone in this fight.

I don’t know if I’m useful to anyone anymore. Somedays I’m pretty certain I am not. Somedays it feels that no matter how much I try or how much effort I put into doing what I can for others, it’s not enough…or infact is detrimental in some way.

I want to keep living. I can’t accept that this is all my life was to amount to. I’ve been fighting for life since I was a young child…right up to this very day. I’m a good person. I am a giving, caring, empathetic and nurturing person. I want to help others, to give whatever I can to people in need. My husband said the other day that if I won the lottery of billions, I would die poor because I would give it all away, and this is true!

But how can I help anyone from a bed while in the fetal position clutching a heating pad in tears? This can’t be my “purpose” can it? I keep thinking I will figure it out. I will find a way of being useful, a way to help those who would appreciate it and not take it for granted. But each day I wake up and either the pain is too great to move or I am recoving from the day before that was.

Our finances are in ruin due to medical bills. With more to come. It’s just added stress that also wreaks havok on my already totally wrecked body and precarious emotional state.

But I’m not throwing in the towel. Not yet. But I’m kinda throwin in a cotton ball…askin for a truce for a bit so I can catch my damn breath here…and plan the next fighting sequence.

As always, I believe in the power of prayer, so I will take all I can get…

 

believe

I believe in positive thinking and gratitude…and I’m doing that daily, with a few falters here and there.

I believe in laughing, loving, living, learning and listening.

I believe.

T

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Mother’s Day!

This will also be a short entry.  I just want to say that I am sooo very thankful to be alive on this Mother’s Day.  To spend the day with my family.  Especially my two wonderful children, Jeremy and Jessica!  I love those two more than they can possibly comprehend.  Without them, I couldn’t go on.  They are my reason for living.  So thank you God above for blessing me with these two awesome children and for allowing me to spend another fabulous day with them!

“A mother’s love is unconditional and never dies”

Kindness

I am reading a wonderful book right now…it’s entitled “One Simple Act” written by Debbie Macomber.  The sub title is “Discovering the Power of Generosity.”  I have only read a couple of chapter so far, but it really is inspiring.

It’s the whole “Pay it Forward” concept, that I am sure we have all heard of.  I know most of us make it a habit to be kind to others…but this compels you to do even more.  To be really conscious of how you are treating others and to try to do really wonderful things for people on a regular basis.

One example is where it is winter and she is leaving a bookstore and she has her gloves on, her winter coat and is in her car with the heater on…she is headed to the store for some quick items.  She sees a man in the median strip with a sign “Hungry, will work for food.”  He has a white bucket for money.  Now this woman has a son in his 20’s who has left home and is estranged from the family due to drug issues.  So, seeing this man out in the frigid climate without gloves disturbed her…but she figured if she gave him money, there was a chance it would be spent on drugs/alcohol, etc.  While in the store, she just couldn’t get this man out of her mind…she bought him a pair of gloves!  She drove back to him, rolled down her window…he approached with his bucket out…she handed out the gloves, he looked at her bewildered and she explained she wanted him to have some protection from the elements…he thanked her and as she drove away, she saw him putting them on in her rearview mirror.

It seems like such a small thing.  A pair of gloves.  But who knows?  That one act of kindness, with nothing expected in return, could have given that homeless man a seed of thought…that there were good people in the world, that there was hope…maybe it just made him want to do something nice for someone…but it did mean SOMETHING.

Another example was seeing a young mother in the grocery line, without enough money to pay for her groceries and offering to pay for them.  Or offering to pay for the car behind you’s fastfood order.  There are other things that don’t cost you a penny…holding doors open, offering to do a seniors grocery shopping, shoveling someones drive for free, taking someone a casserole…just a simple smile and a “How are you doing?” and honestly stopping and caring about their answer.

If every person tried to do one or two kind things everyday…wouldn’t the world be a more pleasant place to live?  It seems we all get so bogged down with our own lives and struggles…we stop seeing each other.  I know I get crabby and inpatient with people when they treat me badly (as noted in my previous blog) but I try to understand that they are probably just having a bad day or don’t feel well.  There are people out there who just don’t even seem to appreciate when you are nice to them or when you try to do something helpful for them, but I am sure deep down they do and it does mean something to them.

The world is tough sometimes and we are all struggling in some fashion or another…some more than others of course…but we would all be better off if we could try to remember that we’re all human, we all have families, we all have our problems. 

Thank you for reading my blog!  Please pass it on!  Go do something nice for someone today!

“Nothing says YOU MATTER TO ME more than the act of investing time with the people we care about.”

Another long and lonely night! Just me & my pain.

Well, it’s after 11am, and I just woke up…and don’t want to be up now.  This is a regular occurance due to my chronic pain issues.  Maybe I should just entitle this blog “A day in the life of a pain stricken woman”  The pain is sometimes so intense…you can’t take a deep breath, you can’t move, you can’t even cry.  That was last night.  It feels very much like there is a knife in your belly just moving around cutting and jabbing at your innerds…alongside a blowtorch that is joining in on the fun.  Then add to that the spasming of your intestines (mine are essentially glued together with adhesions, with strictures..makes food debris hard to travel through) I can actually put my hands on my belly and feel the spasms and rather violent peristalsis that is occurring…it feels remarkably like a baby moving around when you are pregnant.

On these many nights being on the pain rollercoaster, I try to read…if I can concentrate through the pain.  Or surf the net trying to find pain control ideas.  Or just lay and pray.  Alot of praying.  Trying to make “deals with God”…you know, like “Please God..just end the pain that I am in!  If I am not doing any good on Earth, please just take me home with you!”…so far he hasn’t taken me up on that offer, so either he believes I am or will be of some good on this Earth.  I try the meditation techniques…the deep breathing is hard because it hurts to take really deep breaths…but I do what I can.  Visualization is nice…I picture laying on a warm sandy beach with the waves lapping at the shore, smelling the salty air, sipping a cold margarita, watching the tanned surfer dudesssssssssssss…uh ahmmmm….never mind….lol. 

These nights of pain are very lonely. VERY lonely.  I sometimes feel like I am the only person on the planet dealing with this suffering.  I know of course that I am not, but at night it sure feels that way.  I have friends on facebook and myspace who also suffer with various chronic pain conditions…and I thank God for them everyday!  This is why the computer has become my lifeline in a sense…they are the only people I “know” who are like me.  No one in my real world suffers with the intense pain that I do on a daily basis.  Pain year after year changes you as a person.  You have to live differently.  You can’t always do what you want to do when you want to do it.  You are a slave to your pain.  You may want to go take a walk…but your body says “No way sweetie!”…you may want to go shopping, and you DO!  Then about 20 minutes in your body goes “PUNISHMENT TIME!” and there you are, standing in the middle of WalMart with a cart of stuff and you suddenly can’t move due to the pain…so you stand there with this look of constipation, not moving…sweat breaks out…you begin to panic, wondering how you will manage to walk up to the registers and check out…or just ditch the cart and get to the car…I feel embarrassed…like others are staring at me…so anxiety kicks in, the adrenaline makes me move slowly to the register as if nothing is wrong with me…I check out and make it to my car and start to cry as I drive home…and cry all the way…not caring that the people in cars beside me can see.

On the days or nights when I am having a pity party…I feel like living with “Invisible Diseases” is very different from other ailments…If I have my legs amputated….people can see it and feel empathy…if you have cancer people KNOW what that means.  But with Adhesions, Fibro, Antiphospholipid Syndrome, Neuropathy, tendinitis, plantar faciitis, hernias, degenerative disk disease, arthritis, migraines….people can’t SEE these illnesses…they may not even know of them…and when you are like me, who has ALL of those ailments (except plantar faciitis) you feel like a lonely little freakshow, that no one understands.  I often get mad at God, I am ashamed to say…and I scream “Why me? Why do you hate me? Why so many health problems at once? “…I keep feeling there is a reason for all this physical suffering….and I am on the path to figuring that out.  I could deal with most of the issues…it’s the abdominal adhesions/neuromas and hernias that cause me the most horrible pain….but, my Grandma says, he wouldn’t let me deal with all this trauma if he didn’t think I could handle it…so he must REALLY have confidence in my inner strength!  lol

I just dream of being normal again.  Of being able to make plans with friends a few days in advance, and not having to cancel due to pain levels…you do that enough with friends, and they stop trying to make plans with you…lol.  Tired of being asked “How you feelin today?”…because the way I feel rarely changes…although there are “tolerable days” “bad days” and “horrible days” so I guess I have  a few to choose from.  I wish I c ould eat a big juicy steak with corn on the cob!  I wish I didn’t have to wear this stupid binder.  I wish I didn’t have to swallow 11 pills or more every day.  I wish I could be more active, without suffering afterwards.  I wish my belly didn’t buldge out.  I wish even SOME of the pain would go away!

I worry too about the consequences of taking all these meds I am on.  I am only 42 years old…taking all these pills for the next 30 years isn’t gonna make my liver very happy…not to mention, my body will build up a tolerance to these pain meds…then what happens?  I am on really strong doses already…what do we go to in 10 or 20 years?  It’s these things and more that fill my mind at night.  But, then its daylight again…I suck it up and pretend to be one of the “normals” and go on with life.  There are people out there worse off than me for sure.  Atleast I have a roof over my head, food to eat, family/friends, clothes, and this computer to keep me in touch with friends!  With all this crap that I whine about, I do know that I have much to be thankful for and I thank God each and everyday for all of it.  I guess my deal is, I just wish for a way to make others understand what people with invisible illnesses are dealing with…little daily activities that some take for granted…are a struggle for us…shaving your legs, getting in and out of the  car, getting clothes in and out of the washer/dryer, standing and doing dishes, carrying a case of soda, going to the bathroom (yes I just told that), walking for more than 15 minutes, picking up small children/animals, reaching for something above your head, bending to pick up something off the floor, pushing a vacuum, dancing, just getting up from bed (I must roll onto my side and grab the rail to pull myself up), blowing your nose, sneezing, crying…and worst of all laughing.  I love to laugh…and now when I do…it brings physical pain.  I used to laugh until I cried…now I try to avoid that, because it hurts so much and feels like my belly will split in two.  I miss sitting with my son watching stand up comediens on tv and laughing hysterically until we were crying and squealing like pigs unable to breathe!  lol….I still laugh of course…and once in awhile even to the point of tears…but its painful. 

I keep looking ahead though.  The future is gonna be better.  I learn ways of dealing with all of it.  I know when to rest (mostly)…luckily I love to read and play on the puter!  I don’t mind being a “homebody” for some people that would be unbearable.  It sounds nuts, but one way I deal with all my ailments is this:  In my mind, I have decided to think that God knows there is only one thing that I couldn’t bear at all, and that is for either of my children to be seriously ill…so I choose to think that He put all the illness on me, so my kids wouldn’t have any problems…and then I say Thank You God!

So, that’s how I will end this blog (other than the following quote)..is with THANK YOU GOD! Thank you for my life, my family/friends, my books and my computer!  😉  Even if no one reads my blog, that’s okay..it feels good to get things out of my head!

Surrender comes when you no longer ask, “Why is this happening to me?”  Acceptance of the unacceptable is the greatest source of grace in this world.

PS)  Thank you to those who are reading!  Some people keep their lives private…I obviously don’t have that need…I am what I am and I am not ashamed or embarrassed.