Friday, June 01, 2012

Taking Back My Life

By Denise Coleman Sunday, January 24, 2010

Several weeks have gone by since I have posted anything, although I have enjoyed reading what others have written.  I do hope everyone had a pleasant holiday season and that your New Year is filled with good health, happiness and love.

 

It’s been a difficult few months between moving to a new apartment in my building right before Christmas, the hectic but pleasant holidays, and then some health related problems that have not only been difficult to treat but also usurped the little energy I had left.

 

Having one chronic illness is difficult enough.  .  Unfortunately, I have several chronic conditions, including but not limited to:

  • Chronic pain from a spine problem I have had since 1964, for which I have had four spinal surgeries;
  • MS, which can manifest  in a variety of ways and results in the need for various specialists to manage these symptoms;  
  •  Complications like chronic lymphedema and cellulites that resulted from compromised lymph nodes and infections during a series of five surgeries on my right leg after I fractured my right tibia/fibula and hip; 
  • More recently, I have been dealing with a chronic cough for which I am seeing a pulmonologist;
  • Over the last three months I have had two surgical procedures to close up veins in my left leg because I have venal reflux, which prevents the blood from being pumped from my legs up to my heart.  The blood then pools in my legs.  I am scheduled to have the procedure done in my right leg next month.
  • Last June I developed a kidney stone and had to have that blasted out of my system;
  • And I continue to deal with unmanageable high blood pressure that I can’t get below 160/100, even though I take 3 medications a day.

 

Of course not stated here are the mobility and balance issues, the double vision, the bladder problems and other cognitive and physical symptoms related to MS, for which I see various specialists and have to either take medications or treatments.  The fatigue that I experience from my MS is often exacerbated by any one or more of the other chronic problems that might act up, or the medication I take to manage it, and between them all there is no way of knowing in advance how you will feel on any given day.

 

Does this sound familiar to everyone?  Do you find it difficult to make plans? Do you miss friends and going to social events?  Are you embarrassed by not being able to fulfill a commitment you make?  One of my doctors asked me how I felt.  For a minute I didn’t know how to answer because I didn’t want to just give a litany of complaints so I simply said, “I feel sick and tired of feeling sick and tired.”  I was pleased that she didn’t think I was being flip but seemed to understand that I was at a level of frustration and despair that had been coming on for a long time.

1/25/10 9:39am

Good morning Denise,

 

      I wish you more than good luck for the future...I wish you health, and joy and peace and more good luck for whatever you would like to accomplish in 2010. I commend you for even forging ahead the way you have. It truley puts me to shame. As to your first part if anybody else felt that way... I surly do, but I have had many less surgical procedures  done. But my life is a stand still with nothing but medical things, etc. I won't go into my stuff, but I did want to write and let you know that I did read your story , can identify with it'  and am so encourgaged by it !!! I am so sorry you are going through all of this, but the way you are handleing it is what amazes me an encourages me.

 

I wish you Good Luck in "2010"

Diane

1/28/10 1:25pm

hello Denise, I read your post and you must be a very strong person, I am a paraplegic for 35 yrs,and I live in  chronic pain, I admire you for facing it head on. I don't even know you but would like to tell you I care and my prayers are with you!!

1/28/10 8:56pm

I can certainly relate to your posting.  I have experienced many of the same type problems.  I am trying to do the same for 2010.  Will be thinking of you and wishing the best for you throughout the coming years.  Thank you for so accurately wording the plight of these conditions.

1/28/10 8:57pm

Yes, I do know what you mean. Before I became disabled, I was a senior executive. My friends knew I was good on my word, my employer knew I made deadlines happen and I enjoyed the gift of relationships that people sought with me.  I am now unable to commit even to volunteer work as I have no idea how I will feel day to day, hour by hour...even minute to minute.  I have reflex sympathetic dystrophy due to a nerve injury during surgery ( to my brachial plexus) that has left me with partial use of my right hand, weakness and constant pain. I have high blood pressure,  hx of idiopathic cardiomyopathy, left ventricle, polyneuropathy and gastroparesis. I am nauseated 24/7 if I eat, I am in agony if I stand or exercise (except swimming).  My daughter said "who wants to be talked to when they just stubbed their toe and feel like they are going to throw up all at the same time'...that's about 75% of my reality....I am a survivor. I pride myself in what I have accomplished in life and have had to learn how to redefine myself and my feelings of accepting love even when I am not the "giver'.  I made a joy list.  It consisted of things I love, that give me a lift (nature-walking on the beach etc) AND things I could never do while working 34 years.  I pick three things a day and make sure they happen.  Even if it is 'go into backyard and smell all the flowers".   I am not my multiple illnesses, I have certain diseases but they don't have me.... my true friends know, that plans with me are 50/50. If they fall through, we go to plan b... and as we get older, I find it is a real gift both ways.

1/31/10 2:57pm

Thank you for your inspiring message.  Your inner strength comes through your words and I can hear how much you miss your former life while at the same time you are committed to making this current reality the best it can be.  Thank you for affirming my belief that there is still so much I can do and share, I just have to think differently about what that is and how I can share it.  

I am a volunteer with the American Pain Foundation's Power Over Pain Action Network (POPAN).  We are changing that name to Action Network, which is much easier to get around the tongue.  The main goal of our work is to remove or at least reduce the barriers to effective pain treatment, whether these barriers are a result of legislation, lack of education about pain in medical schools, or perception.

I had dropped off the non-profit boards I sat on and had withdrawn from volunteer organizations for the same reason you articulated. I was never sure I could fulfill an obligation, attend a meeting, etc.  The APF staff is the first group of people, non-medical professionals for the most part, that understand not only the physical impact of pain but the emotional and personal impact it has on people.  I am continually reminded that they understand if I cannot do something or if I have to cancel  something, and they make it so easy for the volunteers to have an impact.  I urge you to look at the website, www.painfoundation.org and then click on the icon that is either for POPAN or Action Network, I am not sure if they have changed the web site yet.  I became an active volunteer last March, attended the Pain Summit last June and have found the experience to be one of the best 'professional' experiences I've ever had.  

I had a 20+ year career in higher education administration and was responsible for all external relations, such as government, fundraising, alumni, media, community, etc. so I was always very involved in many things.  I have missed those connections and find my work with the Action Network has done a lot to get me out and involved again, and I feel I am working on something that can really have an impact on people's lives.

 

Best of luck to you in all your endeavors.  Please stay in touch and let me know how you are doing, okay?

Best,

Denise

1/31/10 11:06pm

Hi Denise,

I was thrilled to read your note. I have been on several sites over the past few years but haven't connected with anyone who has gone from a professional status to disabled. It is a unique experience and such a Yin and Yang one!  I thank you for sharing the info on the APF as I am in touch with the group here in Sacramento and fully support their cause. I did not know that there were volunteer opportunities and will check the site. 

 

I have had such a bad experience with pain meds that I stopped taking them except Lyrica and Cymbalta.  I literally had a benign brain tumor and gastroparesis and no one responded to me except to blame my symptoms on the meds!  Thank God I listened to my inner voice and pursued treatment- had surgery to remove the meningioma (outer brain thank God) and was diagnosed as having no emptying motility in my stomach.  It is horrid that pain sufferers have to suffer more due to the judgement or dismissal of the medical community. 

 

I will look at the site to see what I can contribute. 

 

Where do you live?  I would love to share email but not sure of posting it on this site???

 

Thanks again

Take care.

Jacquie

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By Denise Coleman— Last Modified: 12/18/10, First Published: 01/24/10