Let me explain. Music for me is a release. Music is like poetry- I look to it to find the perfect representation of what I'm feeling. I look to it to uplift me, because somehow if I find the right lyrics, the right beat, it transforms my life and I'm taken to a different place. But there are times when I just feel so lost and afraid and alone that I look to it to commiserate with me.
On Wednesday I had my daily injections, but it was a very different visit. I was having such issues sitting leading up to the visit and quite literally could not get through my classes. I was in so much pain I had to stand, which I am still embarrassed to do. After a check up, we realized my obturator externus and obturator internus muscles were highly sensitive. When I say highly sensitive, I mean when Dr. Kellogg lightly touched them, I jumped off the table in pain. She decided to give me some injections deep into these muscles to try and help me sitting. During the first injection I broke down. I can count on my fingers the number of times I have broken down in doctor's offices, but once I started, I couldn't stop. It was because of the pain at first, but then as she continued, I couldn't help it. I looked at her and she was upset for me and understood everything. She said, "You're tired of this, aren't you?" That's exactly what it was. I am tired. I am broken down. I am defeated. I am tired of no answers and false hope and working hard and putting in the time, yet I get worse. After the four injections in the muscles she asked if I wanted to stop for the day because it was rough and painful and quite enough to go through. I told her might as well do the vaginal injections since I'm there. After those, we talked about much more aggressive treatment, since my muscles are some of the worst she's seen and she is very upset that nothing is working. So right after I graduate we'll be more aggressive, meaning I have to stay here the entire summer for treatment and PT. Fine. All my plans for the summer are ruined, but I understand that health comes first. Fine. But I was upset, so I collected myself after the appointment, waited for the bleeding to go down, then walked back to my car. Of course the one day I would have called a cab, I couldn't find one. Then I rushed back to school to go to staff meeting, and just blasted I Dreamed a Dream on repeat. I felt the same frustration Fantine sings about.
But the tigers come at night
With their voices soft as thunder
As they tear your hope apart
And they turn your dream to shame...
I had a dream my life would be
So different from this hell I'm living
So different now from what it seemed
Now life has killed the dream I dreamed.
So different from this hell I'm living
So different now from what it seemed
Now life has killed the dream I dreamed.
Now I understand that's not healthy and not the mindset I should be taking. So after my meeting, the other Tamra quickly took over and I started listening to Hey Soul Sister on repeat. And I listened to it for the next two days and that song is what kept me thinking positively. I started thinking about new plans for my summer- I couldn't do anything athletic, but there are other options. What books could I read? Could I do research with a professor, see old friends, get better at chess, finally learn to cook... I started to plan and found myself calmer and under control.
Fast forward to Thursday when I get a call from my doctor. You might remember him from a previous post as the one who thought I did not have a tear in my right hip and who thought I should be working out more to get in better shape and my pelvic issues shouldn't be a problem. Well, turns out I do have a tear in my right hip. And my MRI scan came back with a variety of other problems- I have a small tear in my pelvis, it's inflamed and there's fluid, etc. etc. The point being that I was right and that there are reasons for my pain.
I sent my MRI reports to my specialist, my PT, and my hip surgeon and I should be hearing back tomorrow if I'm going to need (yet another) hip surgery this summer or what the course of action is. I am going to get them all to communicate with one another so we can finally get on track. Please.
So right now I'm on the eve of finding out a lot of information (hopefully.) It's been a rough weekend. I did not feel like picking myself up anymore. I am sick and tired of things being wrong. I am 22 years old. I am supposed to be graduating in a matter of weeks. I am not supposed to be worrying about my health like this for another 40 years. Right, I know, I know. Self-pity is worthless. But I know these things and I Dreamed a Dream is still on repeat. I can't get my head out of this place right now. I just want a normal life. So desperately. I do not know what I am going to do about class tomorrow. I can't even fathom sitting for a little, not to mention five hours of class. I don't know. I am losing it. I am. I am sick of keeping it together. I know what is expected of me. I sat down and I tried to write my thesis this weekend because I just want to finish and turn something in that's representative of all my hard work these past months. But I just sit and I can't write. And then I can't sit. And I can't focus. And maybe that's partly because of the medicine I'm still on. But I just don't know. Too much has been thrown at me all at once and I just want graduation to be here and to walk and to be done. And at this point I don't even know how I'm going to do that.
I want to crawl into bed and not leave. I want to run away. I want to feel pain elsewhere because I am tired of feeling the same pain day after day. I want to stop asking for help. I want to stop needing the help. I feel so cold right now and shut off. I don't want to be social and there are very few people, if any, that I want to let in. I'm tired of hearing that I am a strong person and that I am going to get through it. I don't want to follow anyone's expectations anymore. I have emails waiting for me to answer that I feel incredibly guilty about. I want to be a role model, and I want to encourage people having similar experiences, but I can't be that person today. I want to lie here and I want to just... I am falling and I can't stop myself anymore.
7 comments:
Hang in there- I want to tell you that you will improve.. I once was much like you describe and have gotten much better...first the TP injections then PT.. PT really has helped me the most. Raven and that group is excellent.
I am glad the MRI showed something- it probably is playing a big part in all of this ..as the hip being like that most likely could be throwing off the pelvis and making the muscles tight.
You are a role model, Tamra. You don't have to answer emails or always write encouraging blog posts. You are a role model by just being yourself and being honest about how hard this really is. I really hope the best for you. Don't worry about living up to other people's standards, just do what you need to do to keep going, and people will respect you for that.
www.downtherevaginalpain.blogspot.com
I am really sorry that you are going through this. I just had an appointment with a specialist on Friday, I had to drive 3 hrs to another state and I'd waited so long to get to this point. After spending maybe 20 min or so with the doctor after all that, and being put on the standard first line treatment for VVS, after I tried to describe everything I'd been through... ugh. As I said to someone, if I could be the last one to go through this, I would do that in a second so that no one else would have to suffer so much. I can't imagine how much you've had taken out of you by all these years of pain, and trying, and what feels like failing. I tried to post something myself afterwards on a normally supportive community, but all I got were people being bitchy to me because I didn't want to try what the specialist wanted (oh goody, lidocaine gel!). Anyway, we don't expect you to be perfect, or strong, or 'with it' all the time. You've been through a lot and sometimes the only thing you can do is wallow in misery for awhile until you feel ready to get up. My empathy and good wishes go to you.
Sometimes you have to hit rock bottom before you can get up again. It stinks but I think it gives us a different view of life when it happens.
I feel the need to cut off all human contact when I hit this point, it's for sanity's sake. You are so tired of everything, that you can't imagine having to deal with someone else's problems (I feel this way...if I can't deal with my own stuff I can't deal with someone elses)
I hope things get better from here on out and I'm praying for you!
Sometimes you can't be strong. Sometimes you just need to breakdown, to have a period of time where you scream and cry and listen to sad songs and watch sad movies and just not hold it all together. Even the strongest people have breakdowns. No one can hold it together all the time.
The key is the moment that comes later, after you've given yourself the hours or days or week of being miserable, when you look in the mirror and say, "Enough is enough. It's time to be strong again." And you pick up the pieces and work hard again.
Admitting your weakness, your fear, your frustration, that's what makes you strong, Tamra. Pretending it's not there is a sign of weakness. You need to face these frustrations head on in order to overcome them, and I have faith that you will. It's horrible that it's taking so long to find an answer, but you will find one. And in those moments when you can't have faith in that or in yourself, your friends and your family will have faith for you.
Tamra,
My heart goes out to you because I know every emotion you describe, every pain you feel. I too had to write my thesis in pain and on high doses of meds. I was so strong for so long, but then I'd reach a point where I'd feel too tired and beaten down. I'd just cry and cry in my room.
I've had severe vulvodynia for the past decade, age 20-30, and I have to tell you that I am feeling so much better. I had seen every expert and tried every therapy, with only
modest improvement. This year something clicked. I tried Botox injections, started seeing an amazing PT in nyc, and started using Dr. Goldstein's estrogen/testasterone compound. For the first time in a decade I can have pain
free intercourse! All the time! The guy I'm dating doesn't even know I have vulvodynia. I remember back to those bleak years when I seriously contemplated suicide just to free myself from the pain and burning I felt 24/7. I can't believe I've made it this far--and you will too! You are an amazing woman, and I know this will be behind you sometime soon. I'm so sorry you are suffering, but it will not go on forever.
Tamra, I'm a bit of a silent reader on your blog. Much of the time, it's because your posts are so insightful that I feel I have nothing intelligent to say in return! Thank you for honestly sharing how you are doing. You are an encouragement to so many. Take care of yourself.
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