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Love Bug

April 16, 2010 in Allergies, Awareness, Chronic, Conditions and Diseases, Diseases, Education, Life Issues, Medication, Novel Patient Posts, Prednisone, Relationships, acne, art, autoimmune, autoimmune disease, autoimmune diseases, chronic illness, chronic illnesses, complication, dinner, disease, exponentially, feelings, first date, food allergies, funny feeling, health, help, hope, horseback riding, illness, illnesses, life, long time, pain, pills, place, racing heart, relationship, road, share, steroid, struggle, symptom, tennis, walk, walker, wheelchair by Novel Patient

Broken HeartRelationships are complicated enough, but adding chronic illnesses into the mix increases complications exponentially.  In fact, being bitten by the love bug leads to all sorts of symptoms, side effects, and potential complications.

It’s been a long time since I’ve let myself like a guy.  So imagine my surprise to find myself with a good old fashioned crush on someone.  But I have all the symptoms of a crush.  Fluttering in my chest.  Racing heart.  Warmth in my cheeks.  Funny feeling in the pit of my stomach when I think about if he might like me back.  But it’s also brought up a lot of confused feelings – some not so pleasant.

I feel so inadequate because of my illness.  Why would he want me when he could have countless girls who are whole and healthy?

heart medicationDating me would mean dealing with all my limitations that even I don’t want to deal with – side effects if you will.  It would begin with setting the date pending me feeling up to attending.  Not being able to keep plans because of my illness has caused problems even with my closest friends.  Breaking a date wouldn’t exactly be the way I’d want to start a new relationship, but the possibility is a reality that would come with dating me.  Then when he’d pick me up we’d have to lug my wheelchair or walker on the date.  The first thing I want to explain to him would hardly be how to assemble my wheelchair.  At dinner he’d get a full education on my eating difficulties as I filled the waiter in on my food allergies and took pills with dinner that would allow me to digest my food.  Sounds like a pretty mortifying first date in all honesty.

I worry that I wouldn’t be able to do his favorite activities with who ever I date.  I can’t even do my favorite activities anymore.  I can’t go hiking or horseback riding or play tennis.  What if physical activities are an important part if his life?  How would I ever share that with him?

And then there’s the issue of feeling inadequate due to my appearance.  I’ve put on 150 pounds from being on steroids (Prednisone) to control my autoimmune diseases.  Though I’ve now lost a small portion of it, I still feel so physically unattractive.  Not to mention the horrible acne and hair growing in strange places the same medication has also caused.  I so desperately want to be thin again and have clear skin again if only so I will be physically appealing to guys again.

lⓄveThen if things do work out after the initial shock of dating someone with chronic illnesses, there’s still all the complications that can arise down the road.  What if he gets tired of dealing with the day to day struggle of my illness?  If we someday get serious and get married, the reality is that having children and even sex itself can be difficult with a chronic and painful illness.  If we did have children, would I even have the energy to raise them?

I know.  I know.  Now I’m getting way ahead of myself.  But I don’t really know what else to say.  It feels like nothing I can say will explain how horribly inadequate my illness makes me feel.  I barely have the energy to be a good friend sometimes let alone a good girlfriend.

I hope that someday I find someone who can look past my illness and see me.  But until then I can’t help wishing that the love bug didn’t even bite me in the first place.
love bug

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Walk By Faith

March 10, 2010 in Baptismal Font, Christianity, Discussions, Featured, Genesis, God, Jesus, Jesus Christ, King James, Latter Day Saints, Life Issues, Mormon, News, Novel Patient Posts, Recovery, Religion and Spirituality, Symptoms, baptism, blessing, blog, chronic illness, church of jesus, church of jesus christ, church of jesus christ of latter day saints, closeness to god, comfort, dad, divisive subject, faith, grand scheme of things, healing, health, help, jesus christ of latter day saints, king james version, life, local church, long time, melissa, mom, moment, opportunity, peace, place, religious school, share, small miracle, spirit, universalist unitarian church, wheelchair by Novel Patient

Walk by Faith and Not by Sight

Arise, walk through the land in the length of it and in the breadth of it; for I will give it unto thee.
Genesis 13:17

He answered them, He that made me whole, the same said unto me, Take up thy bed, and walk.
Then asked they him, What man is that which said unto thee, Take up thy bed, and walk?
And he that was healed wist not who it was: for Jesus had conveyed himself away, a multitude being in that place.

John 5:11-13 (King James Version)

Sunday was a small miracle in the grand scheme of things but not so small to me and a miracle none the less. It was a day that I thought would never happen on many levels. One thing that I thought would never happen was get Baptized, but Sunday was my Baptism. Another thing I thought would never happen was walk at my Baptism, and yet I have gone from not walking from for over a year to no longer using my wheelchair at all in the last three weeks.

I’ve been hesitant to talk about my faith here as its a touchy and divisive subject for some, but I figure this is my blog and my faith has become a major part of my life. I share every other aspect of my life here. I would be remiss if I left something so close to my heart out.

But my faith wasn’t always so important to me. I was raised Reform Jewish, and though I was Bat Mitzvahed, Confirmed, and even assistant taught Religious School at my Temple, I never felt connected spiritually to that faith. So in my more recent adult years I’ve been searching for a faith that helped me feel close to God. For a while For a while I was going to the Universalist Unitarian Church in my area, and though I liked the people and the services very much I still didn’t feel that closeness to God that I so desperately needed.

So when Melissa invited me to join her for services at her at our local Church of Jesus Christ of Latter Day Saints, I thought it was a long shot but worth at least checking out.  I had already learned a lot about being Mormon from her during the time she’s worked for me, and she had suggested I could get a blessing for my health when I went to church with her.

I was totally unprepared for what I experienced; I felt God for the first time in a very tangible way.  I knew right in that moment that my search had come to an end.  That I had found what I had been searching for.  I decided to start investigating the church and taking my Missionary Discussions that I would need in order to covert.  My blessing also said that through faith I could be healed.  It has been amazing how true that has been.

Over the following week I started feeling better than I had in a long time.  I decided to capitalize on the opportunity and try walking again for the first time in over a year.  I started with just a few steps.  I expected for the recovery process to be slow going.  I expected that it would take months to build up enough strength to walk more than a few steps at a time after over a year of being in a wheelchair or bed full time.  But I have been praying every night and the improvements to my walking have been exponential!  And in just three short weeks, I went from my first steps to ditching my wheelchair completely!

So Sunday I was Baptized, and I walked the whole day – including down the steps into the Baptismal Font and up again.  My Dad and his girlfriend Wendy were there which made my very happy.  My Mom chose not to attend which was the only sad thing.  It was one of the very best days of my life! And with it I have found such peace and happiness the likes of which I had never known.  Words cannot describe how grateful I am.  It has been such a relief and such a comfort.  I truly believe that through faith in Christ I have begun the healing process!  And I am so thankful to Him for this and for the closeness I now feel to God.  Through Him I have found what I was looking for and more than I could have ever imagined. With the Missionaries who Baptized me My friends after the Baptism Melissa and me after the Baptism With Dad and Wendy after the Baptism

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Walking: The Power of Positivity and Prayer

February 20, 2010 in God, Handicapped, Life Issues, Medication, Novel Patient Posts, Numb, Positivity, Prednisone, Recovery, Symptoms, chronic illness, faith, faith in god, flare, healing, inner peace, joint pain, life, long time, neurological symptoms, numbness, opportunity, pain, patient, power of positive thinking, rituxan, step at a time, symptom, tremor, wheelchair, willingness by Novel Patient

Today I walked ten whole feet!!!  It was only my second time walking in over a year!

It is something that for a long time I was afraid to even pray for.  But with a lot of prayer recently, I’ve come to realize that with a lot of faith in both myself and in God, anything is possible.

Roll, Handicapped Person, Roll!

It’s also taken willingness to put up with significant pain.  But reflecting back on how much pain I was in while attempting to even stand a year ago (which is why I was in the wheelchair to begin with – very severe joint pain), the joint pain is significantly less than it once was.  I’m not sure what the final factor in the lessening of my joint pain is.  Maybe the Rituxan finally kicked in after all these months.  I just don’t know.  But I am so thankful that I have the opportunity to try to get up and out of my wheelchair again!  I decided to think that it wouldn’t hurt as badly as it once did, and so far it hasn’t!

My goal is to walk three days a week – Monday, Wednesday, Friday – leaving at least a day inbetween to rest, so I don’t completely over do it.

Praying HandsIn the meantime, I’m trying to taper my Prednisone dose very very gradually.  In the recent past, every time I would try to taper the dose my neurological symptoms would flare – face drooping, increased tremors, numbness, and so on.  And I’ve been afraid that this would happen this time.  But so far it hasn’t.  And there are only three differences this time to which I can attribute my success so far.  Tapering insanely slowly, prayer, and the decision to think positivity.  Some combination of the three would be my best guess at the reason.

Though for years now I’ve considered myself a very positive person, it never ceases to amaze me what the power of positive thinking can do.  And now I’ve added prayer and a faith in God into the mix.  I feel a sense of inner peace I have never known.  And perhaps that is the most healing thing of all.

I have a long road ahead of me.  But I plan to take it one step at a time, one day at a time.  That is how I take all of life.  One step at a time.  One day at at time.  With a positive thought in my head and a prayer in my heart.

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