A comment was left on my post "Inherited Common variable immunodeficiency (CVID)":
my 22 year old cousin died recently from his cvid complications, Yes I am sad for this loss but I am also confused, Why him and not me. This bit by bit dying, tumors being removed spinal surgeries, nasal procedures, and all the drugs,,,, enough is enough I wish I had the balls to end this horrific life,
This was a no-reply comment so not being able to email you my hope is to reach out.
Not knowing if you might read this or not my heart is for you. I am so sorry for the loss of your cousin. I am so sorry for your suffering. The pains of surgeries and nasal wounds to heal. All the side effects of the drugs having challenges of personality changes that can just leave you in tears. A shell of yourself, the real you left hiding inside often in shame. It is a shame that is undeserved.
All of you who have been reading here brace yourself for truth. Yep, I suffer daily and have so for many years. Waking this morning and reading my guest note on the weight of it had a strange effect. You see although the suffering be a part of my life at times it seems it has 'become my life'
A couple of weeks before before my diagnosis standing in the shower I knew I was dying. With pneumonia and bronchitis not responding to medications. My strength slipping from me I knew that my days were numbered. For 40+years I had endured the humiliating of testing and suspicion that follow undiagnosed CVID . That was in addition to all the illness and pains. Life limited by odd issues that gave to me a cloud of hypochondria. Even those closest to me began to wonder. That was a great suffering of indignity.
CVID is all about suffering yes, it is a pain covering our soul, spirit and body.
Diagnosis is at the very least a chance to gain out of all of this lifetime of physical and emotional loss a bit of dignity.
I wish and pray for the courage to live this life. Just last night I had shared how I was tempted to feel the way my commenter had expressed. It is courage to live that I need. I am glad that the 'balls' to end it have eluded me. My shoulder is almost frozen up now and it has to be faced. Surgery is inevitable and I need the courage to face it. Then I need courage to face more physical therapy. In 2008 at the Neuro hospital they said that IF I have MS it is in its mildest form. Well now everyday getting up out of a chair often accompanied by a whimper that can slip out before I can stop it. My kids see me in pain, my kids know me in pain, but my kids know me.
Reading that statement about wishing the courage to 'end it all', helps me to remember it is courage to live through it all that I must pray for.
My total knee replacement has been so VERY painful that I even forgot how bad it was before surgery. I have to trust that my shoulder will recover surgery and my heart will meet that challenge too. This year has been new for last year was long and hard. I'll see if this painful movement issue is just Fibromylasia or perhaps a side effect of high counts. Joints get attacked with CVID and so it is.
I think of the woman of 50 who is out there young and vibrant full of activity and I admire her. What is must be like to have energy and strength. Mine was amazing for a season. Missing the ability to garden or do heavy activities without measuring and budgeting what must get done against a wish list of things that need to get done. Independence became asking a lot for help, that too takes courage.
Dear Nancy I now that 'wishing for the guts to end it all' is a thought in the mist of the suffering, I have had it or thoughts like it from time to time. I think dear lady it is the guts to live through it that we have to be begging for. This is hard and you are hurting the losses around you. My own sister died undiagnosed and that is how I came to my own diagnosis after so many years. I miss her and am angry and hurt over her suffering into her end. Grieving this condition daily faced with blows of illness and pain never lets it ease. Don't let us give in and give over into the exhaustion of it all. Perhaps being there to comfort others helps us. There is the Primary Immune Foundation to reach too as well. I have done little of reaching out but after attending the conference I felt so much less alone in it.
I know it is hard, you understand that? Yet lets fight for the 'balls' to live through it with our dignity. CVID can not be allowed to take that away from us. I need you to fight for the courage to LIVE remember we need each other. You strengthen me by reminding me to ask for the courage to live. I thank you for that today.
I pray for my family and husband who has to help me more and watch me suffer. I pray for my friends who have lost me into the vortex. It is as though this has left me holding strings to manage and so few of them.
LIVING with CVID