I cannot believe it is 2013 and we are getting married in 214 days!!
It has been such a roller coaster. Last year was both one of the worst and best years I can remember.
I have 214 days to the wedding. I really want to be in better shape by then, is that vain? I have gone through all the emotions these past few months: disbelief that my body is doing this, shock that my doctor could not help, anger over the entire situation and finally, peace. I am kind of at peace with it all right now. I don’t update this as much because I no longer see the point in listing all of the not fun side affects of endo. I am currently not being treated. My nurse keeps hoping for the best…but my cycle is irregular which means I am ineligible for all of the short trials they were willing to let me participate in. A small victory for me this week has been perfume. I get nauseas so easily and stopped wearing perfume about a year ago. HTB and I stopped at a duty free this past weekend on the way home from a road trip. I bought some and have been able to wear it :-). It really is the small things that help you push forward.
Now I wait. I wait until August and see if I can get pregnant. If I can’t my Doctor says we will discuss treatments then. I get this is what I get for saying to to the Eligolix trial, no to Lupron and no to the other drug (can’t remember). The pain is manageable. HTB wants me to get e prescription for Tramadoul for when I have my period. At my next Doc appointment I will ask about it.
So today is Day One. I weight 158.9 (all time high). As of today I am no longer drinking coffee, slowly coming off of all caffeine. Joining a gym again and trying to get back into shape. No more excuses…and, endo is no longer an excuse for me. I need to live with this disease not let it stop me from living the life I want!
Today is a little worse than yesterday for the simple reason that I couldn’t sleep last night. Still no Aunt Flo. I am afraid to talk to my doctor about the trial, I am supposed to be regular to start it…I guess there goes that. Seven and a half more months until the wedding, seven and a half more months until we are going to start trying for children. I just have to survive until then!
I signed up for Kickboxing and Zumba at my park district. Tonight is the first night…what do I do? Cry endo and go home to my heat pad? Or push through and try to make it through the first class? I think i am going to drug up and push through. I have been looking forward to this for weeks and I really feel like every time I try to start making healthy choices Endo rears its head. At this point I almost feel like I am using it as an excuse. I have been drinking tea for nasuea all morning and plan on drinking a lot of water. I am tired of letting this thing change all my goals. Here is to fighting back :-)….lets see how courageous I feel tomorrow though!!
As of yesterday we have been engaged for one year. Craziness!!
I wish I had something fun to update but I generally feel like I have been crazy busy doing nothing the past few weeks. Wedding planning has a tendency to feel like that. So much to do and feel like you are getting nowhere. The financial aspect has been causing me serious anxiety. I went way over budget and considering the big day is 7 and a half months away I am not sure on what to do. Ever feel like you always owe for something? I was in a little hole there for a while, dug myself out and now Hubby to Be needed help…helped him and now I am back to being in a hole again. To be brutally honest, considering how much we make…there really is no excuse for it. Ah well.
So my sister is officially on FMLA. She has had a cat scan, MRI, CA125 test and a bunch of other things to try to figure out her abdomen pain. Due to her sex related symptoms I am pretty sure it is Endo and to be honest I have been a very bad Endo sister to her. I missed some work back in August but nothing crazy, I just feel like she has given up. And I know her and how easily she is upset…I think her condition is psychological as well as medical. And what really bothers me…makes my blood boil. Is that since she first started having pain she has diagnosed herself with Endo…it is almost like she is hoping to have Endo. AND she likes to tell me facts about Endo (you know the pain in the ass disease I have been dealing with for ten plus years). I was a good sister last week though. She was out of work the entire week again. My endo doctor saw her two weeks ago and wanted her to go see an ortho to rule out some other disease (she has shooting pain down her legs). The Ortho MRI came back clear and she called my endo doctor to get in and was told there was a 2 week wait. She called me at wits end and was thinking about going back to the ER for medication. I called my nurse who got her in to another doctor the next day. The other doctor is not an endo doctor, he couldn’t do much…but he did notice that her GP had given her Hydro-Codone which I guess is a big NO for endo peeps (I didn’t know this). So he gave her new pain meds and she is meeting my doc today. I guess my doc was out of the country. I was really hoping it wasn’t Endo…she is with my Doc right now, I am sure he is scheduling a Lap. She keeps saying ‘I just want him to tell me it is so I can get better’…but there is no cure. She wants to have kids. I wish she understood that.
Enough about me blathering someone else’s medical problems. I am feeling ok. This whole experience with her has made me realize how relative ok is. In normal person terms: my period is a day late, I have severe cramps and I can tell it is going to be a bad one because I have so much pressure in my lower back that it hurts to take deep breathes. I also changed my diet to high fiber (hoping that will relieve pressure) and am on no dairy, coffee, fried foods until Aunt Flo makes an appearance. But in Endo terms…I am ok. My sister complains about it hurting to sit in a car…thats normal for endo. She complains about having to pee a lot when she is cramping…once again normal for endo. She has nausea…I consider that normal. And a few other things. I think when you have a chronic problem like this you just adjust. I hadn’t realized how much I have adjusted, how my ‘normal’ these days is so NOT normal until I was around someone experiencing all these things for the first time.
It is a strange world we live in!!
I am horrible at posting..let me try to recap.
Last week I was on a roll. I went shopping for healthy food, started working out to insanity. I even ran one day! HTB noticed that I was slightly moaning in my sleep. By Wednesday I was cramping mildly. Aunt Flow shocked me and arrived on Thursday, exactly a month after my last period. I called my doctor and they scheduled for me to go in today (the following Wednesday) to have a full gynie physical (‘magic wand’ and all). I called them back Friday because I was pretty sure my period would be over by then. They returned my call TUESDAY (period stopped Monday) and told me we would have to wait another month because I need to have my period for the exams. I may or may not have freaked on the phone SO they re-evaluated the situation and saw me today. I am officially on this trial. Which means in two months I will get the nerve/hormone blocker. Fantastic :-).
It was most definitely a rough weekend. I had a regular doctors appointment on Thursday evening and I weighed 157. Today at the doctor I came in at 150. First of all ouch…my goal comfortable weight is 125-135, second of all WOW. I was dying on Thursday, could that have been water retention? Isn’t that a pretty significant drop? Another note, I have a temp again today. Last month when I went in for minimal tests during my period I had a temp. HTB suggested buying a thermometer and seeing where I am at everyday. They always take my temp AFTER the physical exam though. I think my temp might raise due to the mass amounts of uncomfortable/tension/pain I feel during the exam. Not sure.
On Sunday I was in a really dark place again. I picked a fight with HTB on our way home from dinner and stopped myself. When we got home I sat him down and told him my blood was boiling. My blood was literally boiling, the hair was standing up on the back of my neck. I felt like punching something for NO reason. He was rather shocked. I am glad though that this was the first time I knew what was going on. I just went to bed early. My pain was pretty consistent all weekend. I slept a lot, ate a lot and watched a lot of movies. I am still very low on energy and am still cramping.
I am jumping back on my health kick on Monday. Need to recover from this past week. That’s about all my news :-). I am happy to finally have a regular cycle again!!!
Thank you ladies for all the nice comments. I agree about the hormones. I have been working hard on trying to…be in control. I am having doubts on my doctor again. They call me to ask if my schedule is more regulated and that is it. That is probably my fault. I told them I am not interested in most of their treatment options, they put me on this trial…which I cannot start until my cycle ‘fixes itself’.
I have an app on my phone that tells me my stats. My average cycle length is still at 40 days. I guess I shouldn’t complain…I have less periods than most ladies. Two weekends ago I felt great. The past few days I am low energy with twinges again.
On to non-endo related items. I signed into weight watchers for the first time since February…how can I say this. I HAVE GAINED 15 POUNDS SINCE THEN. Seriously!!!?!?!?! You know I really don’t think it is a matter of vanity. It would be nice to be more slender for the wedding in August. It would be nice to feel more confident and more comfortable. But it is also about health. I have that endo book, I have my weight watcher recipes, I have officially eaten most of the bad food we have (I didn’t want to have to go through the pantry with a garbage bag). And yesterday…I went for a super healthy grocery shop. I created this blog in August with the intent of being more healthy. HTB and I were talking about this recently…I was in so much pain back then. Looking back I do not know how I am still sane. Now I think I am finally ready to make the changes.
On another non-endo related issue. I am officially ‘off the drink’…no more alcohol for me. I am regressing to being 18 when I drink. I no longer know my limits which causes some fun situations. As part of this being healthy I am trying to make that change too.
I will keep you posted :-). I have some recipes I will be trying, I might share with you all.
I had a realization on Sunday. I think I need to see someone.
I did something on Saturday that makes no sense and really hurt HTB. I mean if he was to leave me I would understand why. I feel like I am drowning. I thought creating this blog would help as an outlet for stress/tension/negativity but it isn’t (it has been great to meet other endo sisters). I am so angry and I do not know why. I literally do not know why. I couldn’t even tell you who I am angry with. I want to fight all the time. I have to focus on trying to not fight with HTB, but I fail at that sometimes. I don’t understand how it is possible to be so happy and blessed….and so angry ALL the time. I literally cannot control by mood swings. I have never been like this before. I have a temper (I am Irish) but usually its rational. I find myself dwelling on past relationships/friendships and getting worked up all over again. Like I want to call high school sweetheart (who I haven’t seen or talked to in over 3 years) just to tell him that…that one time when he said that one thing FIVE years ago…it made me mad.
All I know is that I am not in control. I told HTB on Sunday, my mind is so messed up. I am destroying us…I need to figure this out and I don’t know what to do. I keep thinking its hormones hormones hormones. I have never been to a shrink but I have a few friends who go. I wouldn’t even know what to expect but I think I need to start seeing someone. I have to try something.
Sorry for the weird vague post.
After bragging about how amazing I feel (and lets me honest endo girls, our amazing days still do not compare to non sick peeps)…I decided to be adventurous with HTB. I am not sure if any of you experience this. BUT with the lack of physical intimacy we have (due to pain) I feel like our relationship suffers. I know long term it will all be ok but I feel like there is a layer missing because of my awesome broken body. With feeling great this week I tried twice…which is more then I have tried at all lately. As a result I am SOOOO nauseous. Yesterday was truly horrible!! I was sitting at my desk burping vomit (sorry for tmi). I tried tea, crackers, chicken noodle soup, flat sprite, tums…nada. I literally prayed for pain instead of nauseousness. (Pain was there too but very moderate).
Interestingly enough though it reminded me of something right after I was hit with waves of nausea. I have mentioned living symptom free for years but maybe I am wrong about that. Right after college when I lived with high school sweetheart I had problems withe nausea afterwards too. I am not sure why I had forgotten about that. But yesterday when I came to work it dawned on me that the last time I remember feeling this sick was back then.
On a brighter note HTB is pretty happy. Typical male reaction maybe? A part of me wants to keep trying and keep at it…maybe it will get easier? But feeling like this is horrible. Today it is not as bad…but it is definitely still there.