Hello everyone. I need to share my story because I am at a point where I feel that this disease has spun my life completely out of control.
Four years ago I was not only diagnosed with hep c, but I was told after a panel of tests that I wouldnt be able to conceive a pregnancy naturally. My husband and I had been trying for years, and now i had more than one devastating thing to hold on my shoulders. We had a choice to make, seek treatment or pursue ivf first due to my advancing age (i am now in my early 40's). My hep specialist saw no reason why we shouldn't pursue ivf at the time because newer hep c drugs were on the horizon in the next few years, and I have had no health problems or visible damage to date, only somewhat elevated liver enzyme levels from the chronic disease.
Due to finances, it ended up taking us almost four years to afford one cycle of ivf, and I am shocked to say that that one cycle worked.. I am currently in my 3rd trimester. That is the good news. The rest of my story, what I am dealing with, is a challenge to even type out...
a year after my diagnosis, I began experiencing high levels of anxiety anytime that I even find so much as a small scratch on myself. My mind automatically went into panic mode and I would have to back-track to everything that I touched in order to sanitize it because I do not ever want my husband to be exposed to the virus. This behavior led to me having to wash my hands over and over again, both before and after bandaging wherever the wound is. I can't distinguish between a minor scratch or mark that doesnt seem to be bleeding, and an actual cut. It all has to be covered and I have to sanitize all items i know my husband touches.
The problem with having this sort of OCD means that all of the excessive hand-washing has led to cracks popping up from the severely dry skin. So it has become a viscious cycle that defeats the initial purpose because my hands become worse than ever. No matter what i try to do to break the cycle, i just keep finding more scratches or cracks, especially after house work. There are days when I am spending more time in a restaurant restroom trying to clean and cover a new-found scratch or crack while my husband sits alone at the table eating. It breaks my heart...........
Since I have become pregnant, my OCD/panic attacks/anxiety have reached an all-time high. I now have an additional worry for my baby. Even just thinking about
how I will deal with this when she is here, I start to panic. The OCD has become a thousand times worse now that I am pregnant. It has stolen away any happiness that I should have been entitled to after years of trying unsuccessfully for this baby.
Sometimes these incidents where I discover a scratch or a crack and have to deal with easing my worries, will steal hours out of my day or night, and I'm left in tears of frustration. Something happens every single day. It's like the excessive hand washing has damaged my skin so badly that even the slightest bump against anything breaks the skin.. And to me, any skin break, even minor, means blood exposure. I honestly don't know how to cope anymore. The problem is that if I am not diligent about
the findings, I AM putting my husband (and eventually my daughter) at risk. How do you solve that problem????
In addition, since my diagnosis, I suddenly occasionally get rashes on my forehead, around my nose, and on my chest that sometimes get so bad that THEY even bleed. Imagine the problems that causes me???? It just never ends.
I discussed my anxiety with my doctor and I flat out asked for help. I was automatically thrown a prescript
ion for zoloft, which i will not take while pregnant. I was also referred to a therapist who claimed to specialize in OCD and behavioral therapy- and after a number of pricey sessions, his "plan" to approach my issues was....Medication, which I had told him during the first session, was not an option at this time. No behavioral therapy was discussed, which was what I wanted. If i wanted to just sit and talk about
my frustrations every week, I could sit and talk to my husband for free. There was no benefit to the sessions, so I discontinued them before we ended up spending anymore money that we couldn't afford.
My hope had been to get real help before my child is born, so that I am not having to deal with these episodes after she is here. There is no way that I can continue on this way with a baby that needs my attention. I also do not want her growing up seeing these rituals and mimicking them, thinking that is in any way "normal." I had hoped to have a handle on my panick attacks and the OCD/hand washing so that I could start to break those destructive cycles now.
I want so very badly to be able to enjoy my motherhood, and not continue to be consumed by my fears of every little nick or scratch infecting my family.
My hopes for ever getting the new treatments out for hep c are gone since finding out from my specialist that they can run upwards of 30 thousand dollars a month. All of the hoops to jump through with insurance in order to get them to pay a percentage, are just overwhelmibg, and I'm hearing that some will cover a good amount, most will deny the request all together, especially if there is little or no liver damage.
Maybe they would like to pay for my enormous band aid expenses every month and whatever other help I will continue to need for my OCD for the rest of my life if they don't want to help with the treatment. Either way, it will all add up in the end. I am supposed to return to my specialist in nov of 2016 to see if i am ready to look into treatment, but i can already predict that we wont be able to afford it, even a co pay. We could barely afford the cheapest IVF place we could find to do one cycle, and that took years of getting the money together... Well under $10,000. As such, my hopes for getting hep c treatment are shattered.
I have been a nervous wreck, and constantly worrying about
infecting my husband and/or daughter. I have nightmares about
the nurses not bathing her completely after she is born, to help lessen her chances of being exposed to any of my blood. I spent so many years focused solely on hoping to conceive, that I did not stop to consider how my hep c transmission fears would intensify with a baby.
This diagnosis has ruined my life, and I can only imagine how it has affected my husband, having to see what it's done to me. He has been so understanding and supportive, and he doesn't have concerns, which blows me away because of the intense level of mine. I can barely even kiss him or have much contact because my mind is constantly telling me "what if you have an
open crack on your lips? What if youve got an undiscovered scratch or crack on your hands?" Even our marriage suffers from this disease. I feel that I have to protect everyone from me, so in a sense I bubble-wrap them and never touch them because I am so afraid I'll break them. I have never shared my diagnosis with anyone else in my life, I am so mortified. I don't dare visit anyone and risk putting them in harms way. So in that respect I have alienated my friends and loved ones because inwardly I feel that I'm actually looking out for them.
All of this hell I have been forced to endure because thirteen years ago I had to stay with a family member whom took in a drug addict relative who did not disclose her disease right away (and when she did, she did so with a laugh)-and shared a bathroom with me, breaking into my locked cabinet and now looking back, I realize that she was using my razors, all the while knowing what she was doing to me. This same person would fight with me and verbally express her dislike of me, even threatening to stick me with an aids-infected needle. In retrospect, I realize I am lucky that I walked away with only hep c. But nonetheless, it has destroyed my life. In that respect, she got her wish. She destroyed me. She won. She would be so happy to know what she has caused me, and my own family. I am still speechless and bewildered that there can be such evil in this world.......
Her and this disease have taken so much happiness and freedom away from me, have stolen away so much happiness that I should be enjoying right now. And this is a domino effect which falls back upon my husband, and one day our child.
Now here I am so many years later, given up on 'behavioral' therapy which wasn't behavioral at all, and just hoping for some sort of support, because I am at the end of my rope with how the disease has taken over my life and taken so much control over me. I just want to be able to relax and ENJOY my life, and my new baby when she comes. I want to go hours without having to wash my hands or find another scratch or crack and deal with hours of clean-up. I want to not feel like a prisoner anymore.
Can anyone relate??????
Post Edited (Lostinanxiety) : 12/9/2015 11:22:15 PM (GMT-7)