I seriously need to vent!

[momof3boys]

I got myself so freaking worked up... I feel like Im about ready to explode! :soap: This is all dating back to over 6 years ago.

After we had our third son, In November 2006, three months later my husband had a vasectomy. That was in February 2007.

In August 2007, I started to notice some changes going on with him. He was very tired, had no energy, our intimate moments had clearly went down in numbers... and he was gaining weight. His mood was also changing. Alot of times he would become angry, or have these up and down moments. He just wasnt the same guy. I thought it was all because we had three kids under the age of 3, which keeps up busy.

But as the months went by, things hadnt changed, and I kept telling him something was up. In May 2010, I was watching tv, and saw a commercial for low testosterone. They listed the symptoms, and he had 9 out of 10. I then forced him to go to his dr and get tested. I wanted him to get his blood checked out to see where his testosterone levels were at. So after alot of arguing, he finally caved in, and said he would do it. Now at this time he was 32 years old. For a 32 year old man, his testosterone level should be anywhere between 750-800. Each year as a man gets older, the level slowly drops. Well, when he went in to get it tested, and got the results... it came back at 127! Way too low for his age! So we started seeing a urologist, the one who gave him the vasectomy. They tried all sorts of testosterone replacements... patches, gels, shots, pallets, deodorant, etc. The list goes on and on. Nothing was working. They finally gave up on him. Said they didnt know what else to do.

In August 2011, when we spent a good 15 months with this dr, and said they didnt know what else to do, I started looking around for specialists who can help. I called up the dr I see who helps with my PCOS (Poly cystic Ovarian Syndrom) She was glad to help. She ran alot of tests, and found some tests lower than where they should be. Which then she wanted to rule out things.. so she had him take an MRI. Well, that there showed a tumor on his pituatary gland in his brain. Its not the cancerous kind, but its so small, that there is too much risk to remove it. But its affecting his testosterone levels. So she tried him on Pregnyl. The medication that helps woman concieve. It actually worked! It helped push his level up! We got it up to almost 500! But by doing that, he had to take 2 injections each week, and each bottle that we had to purchase was $60 a bottle, which gave us almost 4 injections. The dr wanted us to get two bottles for 1 month. Which came to $120 a month. We just couldnt afford it. After trying that, and running up a huge credit card bill, she admited it would be best to get his level to where it should be, and he would have to increase it to 3 bottles a month! basicly $200 a month! I told her we were struggling at 2 bottles a month! The bad that is that the pharmacy that we could only get this stuff at, only orders a certain amount each month. They price what they get at a discounted price of $60 a bottle. But if they run out before reordering it, and you need a bottle, the price of one bottle goes up to $180 a bottle! The manufacter retail price! :soap:

So, the specialist who gave us this medication that worked so well, but was so damn expensive, sent us to another specialist. This guy said that since we tried injections of testosterone with the urologist here, once a month, and it went up alittle, but then went back down before his next shot, he wanted to try him on two shots a month. But again, started the dose out on a low amount. so we went with that route, praying and hoping something will work and it will be something we can afford.

In May 2012, he starts to take this testosterone injection, twice a month. He then went back in September 2012 to get blood work done and see where his levels were at. They came back low. 118. OMG. I seriously wanted to lose it there. They said they wanted to increase the dose, and keep it at twice a week again. But it only went from 1mg each injection to 1.5 mg each injection.

Its been at least 6 weeks now on that amount, and no change. he is not scheduled to go back to the dr til December 10. I cant wait this long again. I am freaking losing it.

My mom found a hospital in Arizona that has good specialist that actually remove these kind of things everyday! But when we got ahold of them, they sent us some names of the referred drs, who we checked them out with our insurance and they are all considered in network drs. But the thing is that since they are not in our state, when we called them, they said we would have to pay our Individual deductable and family deductable up front... BOTH DEDUCTABLES? onder: Which to me, does not make sense at all? Why pay both? Then on top of that, they dont offer any financial assistance. So whatever our insurance does not cover, we will be stuck paying.

Then they also said we have to call the specialist who we are seeing now to get forms to fill out so they can send over all his medical information, and that will show them if they can help him at all. But even when they get the records and stuff.. they said they dont know what all can be done til they see him too.

This is causing me so much stress. he leaves all of this stuff up to me. Makes me take care of everything. Medical stuff, bills, house stuff, kids. You name it, I got it all on my plate. I think what got me going today was when my mom called to say she found some medication he was taking that was so damn expensive, online for $52 for half amount of what we were getting for $60 a bottle. Still not worth it.

I give up. I wish this would all go away. I just cant take this stress anymore. It feels like I should be super woman and make a miracle happen.

 

[Chelsea]

Kristin, (((Hugs))) comin' atcha from a stormy state.

First, please don't rip your husband's throat out! My Dad does the same thing; he leaves my Mom to make all important decisions. Then, if she decides something he is adverse to, he complains about it. I think it is routine man thing. The lab should have a routine on that ICD-9-CM code 911.0 (routine male test). My Dad has unrealistic expectations that my Mom can handle it all. Simple fact: she can't!! She's not superwoman either, none of us are. Vast majority of us are super-burnt out.

Usually, I want to hit people who say that it will get better or it will be OK. It is what it is at this point. I guess I would focus on you can control: battling with the insurance company (makes me want to rip my hair out); transferring your husband's record to the new hospital; maybe asking friends/family to help you with funds to pay both deductibles(ugh! I kno); getting free assistance (Partnership for Prescription Assistance, similar?); and taking some time for yourself. Maybe see if a friend or family member would babysit this weekend, so you can rest. It isn't good for you, as well, to have stress levels hit the ceiling.

I know I am not much help.

If I could ship you a spa, I would! I think FedEx has a weight limit though!

 

[momof3boys]

Kristin, (((Hugs))) comin' atcha from a stormy state.

First, please don't rip your husband's throat out! My Dad does the same thing; he leaves my Mom to make all important decisions. Then, if she decides something he is adverse to, he complains about it. I think it is routine man thing. The lab should have a routine on that ICD-9-CM code 911.0 (routine male test). My Dad has unrealistic expectations that my Mom can handle it all. Simple fact: she can't!! She's not superwoman either, none of us are. Vast majority of us are super-burnt out.

Usually, I want to hit people who say that it will get better or it will be OK. It is what it is at this point. I guess I would focus on you can control: battling with the insurance company (makes me want to rip my hair out); transferring your husband's record to the new hospital; maybe asking friends/family to help you with funds to pay both deductibles(ugh! I kno); getting free assistance (Partnership for Prescription Assistance, similar?); and taking some time for yourself. Maybe see if a friend or family member would babysit this weekend, so you can rest. It isn't good for you, as well, to have stress levels hit the ceiling.

I know I am not much help.

If I could ship you a spa, I would! I think FedEx has a weight limit though!

Thank you so much hun!

I know the next steps that needs to be done... I keep telling my husband he needs to call the specialist we are now seeing, to request that he get the forms to release his medical information to the Arizona Hospital. Thats the first place we need to start. Because of the HIPPA law, the nurses there at the specialist's office, wont talk to me. But only to my husband since he is the patient. Which I can clearly see their point. So ive been telling this repeatedly to my husband. He has Monday and Tuesday off from work, and I keep telling him to call the office first thing in the morning to request you get these papers signed so this can be done! But he keeps ignoring me.

What got me going is that my mom calls, to tell me that he has to be put back on that medication that we just couldnt afford. She kept saying we have to get him back on it. She asked me to call my inlaws and ask them to help with the cost. She was going to try to get my aunt to help, and she would also help with what she can. She can see how things are going, and when she saw the numbers go up with that medication, she was happy. So was I... but I kept thinking about what are going to do the next week when we have to order another bottle... and I kept thinking of what our credit card bill is going to be... how we going to pay for this? Which we are still paying off today. Then when we found out about this tiny little tumor located on his pituatary gland, the dr said its too small. There is more risk getting it out, than leaving it and treating the problems with medication.

The frustrated part also came when we were told by the manufactor's of Pregnyl that they offer financial assistance for customers, but you have to be using the medication for fertility reasons and not use it for a tumor! Which according to the FDA, this medication is only approved for fertility issues. Nothing more. We tried using the discounted pharmacy cards you get in the mail and was told that you cant have insurance to use these which we do have through my husband's work. And because we were going to a pharmacy that ordered a certain amount of the medication each month, they sold those bottles at the discounted price, that we can't use the pharmacy discounted card on that price either. If we wanted to use it, we had to get the bottle at $180 a bottle, and maybe take a small discount off of that. But it wouldnt be nothing compared to what they were offering it at for $60 a bottle. then comes the part where you need to order more, and risk the chance of hearing they no longer have anymore in stock, and you need to wait til they get more in, which could be up to two weeks. that means he either has to go without, or we pay $180 for a bottle of them to order.

Either way, I just get tired of fighting with people back and fourth. i gave up tonight and told my husband I cant do everything around here! He should be lucky that I got the financial assistance for him to cover all the medical stuff he had done at the hospital! Two MRI's... co pays, office visits... all that was covered because I called to request the finacial papers, completed those and sent the papers needed back to them.

There was no thanks out of my husband for that. Just the little things I think about that get me worked up.

I agree, I need to take time for myself and relax.

 

[Chelsea]

Just a thought; can the doctor prescribe Pregnyl for you? (It sounds like a dumb question, but maybe not.) Since it is an off-label use for pituitary tumor, and for fertility purposes only? One could legitimately presume you are trying to get pregnant. I dunno. Are there any medicines like Pregnyl that function the same way and are less expensive? (Being a chemist, I would look into those structures, haha, I'll do some research for you.) Can your husband get into any pilot studies/trials, maybe at a research/teaching hospital nearby? They pay for all expenses in that case. (Risk may outweigh benefit though) I am trying to think of what I would do. You are an intelligent gal, you'll be able to work something thru in your mind.

I know we have Shands at Univ of FL here, and they are a teaching/research hospital!

In the mean time, please get some rest; you may feel less aggravated in the morning when emotions settle. Plus, you have TLE, so stay safe, and do a calming thing. My therapist says count backwards, but that never works, lol. I would have to count backwards from 1.7 billion before I calmed down.

 

[MuayThaiFighter]

That is a heavy problem to deal with. For the both of you. I just can't ever wrap my head around why medications are so over the top expensive. It really does get to a point where you realize drug companies just bleed out the insurance companies, which allows them to spike costs. It doesn't really hurt the insurance companies, it hurts the consumer. Because if you ever lose insurance, affording most meds is unrealistic sometimes.

Don't let the stress eat you alive, easier said then done, but more stress can lead to a seizures. I'd talk this out with him, it might really help.

 

[momof3boys]

Just a thought; can the doctor prescribe Pregnyl for you? (It sounds like a dumb question, but maybe not.) Since it is an off-label use for pituitary tumor, and for fertility purposes only? One could legitimately presume you are trying to get pregnant. I dunno. Are there any medicines like Pregnyl that function the same way and are less expensive? (Being a chemist, I would look into those structures, haha, I'll do some research for you.) Can your husband get into any pilot studies/trials, maybe at a research/teaching hospital nearby? They pay for all expenses in that case. (Risk may outweigh benefit though) I am trying to think of what I would do. You are an intelligent gal, you'll be able to work something thru in your mind.

I know we have Shands at Univ of FL here, and they are a teaching/research hospital!

In the mean time, please get some rest; you may feel less aggravated in the morning when emotions settle. Plus, you have TLE, so stay safe, and do a calming thing. My therapist says count backwards, but that never works, lol. I would have to count backwards from 1.7 billion before I calmed down.

I dont think she would prescribe it for me. Ive been seeing her since i was 18, so for 13 years now. She's a great doctor, but I wouldnt want to ask her to do something like that and risk getting her in any trouble. She treats me so good.. she is one of the best drs Ive ever had! She's the kind of dr that if I could get all the drs in the world together, tell them they all need to be just like her! Listen to their patients like she does, take the time, and show them how much she really cares. We've asked about other medications that work like Pregnyl, and the drs cant seem to think of anything other than that, that worked so well for him. I told my mom the FDA should approve it for other uses besides infertility. But of course, when we contacted both manufacters listed on the box, each one of them both denied being the manufacter of it. Which I found kind of odd onder:I mean why would their name be on the box?

There isnt any studies in the area that are dealing with this sort of thing. They say for my husband, his problem is that the tumor is pressing on the pituatary gland which is causing the imbalance of his testosterone level. I told him he is going to have to call the specailist on monday morning and give them a update on whats going on. Ask them what we can do. I just cant see going another 6 weeks like this.

I told him straight out tonight that I can't deal with all of this by myself. The stress alone last year really had a huge affect on me. Our middle son had a tough year in school with the teacher he had. She and I didnt have a good year. It ended up resulting in a meeting with the principal over how things are going, and how she is going about things. But I stressed so badly over it, that it caused alot of headaches, and I had a terriable time with heartburn. I even saw a GI specialist and they did tests to see if I had anything bad going on. He did say based on the tests, I had a mild case of gerd, but based off of what I was also telling him about the stuff I was dealing with, that alone could make it worse too, since I was worrying alot and having alot of daily stress. It wasnt til after school was out, that it went down alot. I quit taking the gerd medication and finally got rid of the heartburn. That alone proved to me what I was doing to my body with all the stress. The last thing I want to have happen is starting having seizures. I know for sure that lack of sleep causes seizures to come for me, and last year I did have a seizure due to having two stressful weeks of alot of stuff to deal with.

We'll have to see what happens. I guess maybe see what the dr has to say on monday when we call. But Im for sure making sure he calls on monday. I cant do everything for him! Heck Im almost 4 years younger than him, and doing everything around here! He needs to help me out!

That is a heavy problem to deal with. For the both of you. I just can't ever wrap my head around why medications are so over the top expensive. It really does get to a point where you realize drug companies just bleed out the insurance companies, which allows them to spike costs. It doesn't really hurt the insurance companies, it hurts the consumer. Because if you ever lose insurance, affording most meds is unrealistic sometimes.

Don't let the stress eat you alive, easier said then done, but more stress can lead to a seizures. I'd talk this out with him, it might really help.

Its insane how insurance companies and the drug companies come together to make sure they rip people off! I was so freaking mad that we found a good medication, only to find out that its not freaking covered! Then the medicationt hat doesnt work as well, is covered! go figure!

I'll be careful when it comes to the stress and seizures. I just need to tell myself to back off all of this and dont let it get to me.