Inspired to Sew Again

Today I get to start a new sewing project. I am so excited bc I have not felt like sewing in a long time. Last summer I made a bunch of dresses to send to Africa but I have not sewn anything this summer.

A few months ago we got rid of two really heavy old wood doors on tracks in my closet. The closest is large but you could not access the whole thing with those stupid doors. After we removed them I decided that I was done with doors and I wanted to do curtains instead. I measured the closet and my  window so I could find fabric to match or coordinate.

Well it turns out that I would need about 6 yards of fabric. I went to the fabric store and the good stuff is about 10 dollars a yard. I thought about going to walmart but I knew I would regret it. Then I thought about sheets. If I got a queen or King it would fit but I couldn't find anything with a pattern on it that I liked.  I gave up the search for awhile.

Then yesterday I started to search again. Eureka! I found something at a college site. The sheets are extra long so I get more fabric. The sheets have a  white background with a black, purple, and aqua pattern. I got one of the print and one aqua to coordinate. The aqua is really a light blue.

Then it came in the mail  today. I am so happy. They look nice with my pale yellow walls. I love colors. The print is going in my closet with some aqua trim. The aqua is going on the windows with some print for a top trim. I opened up the package and started to pin the sheets up on the rods. Now I have to measure, cut, sew, etc.

It will probably take me a week or two bc I will want to make it perfect. I am happy to have something fun to focus on. I love creating stuff.  Here is  what the pattern looks like.
 

Random Updates

Not much going on. This will just be some random updates.

Today is cd3. I went in for baselines and saw my favorite nurse C. I gave her the chapter from Dr. Beer's book about my HLA matching. She is always trying to learn new stuff so I thought she would be interested. She said she read his book years ago, so she was glad to get a refresher.

My us was good and bad. The right side where the lead follicle had been was gone. This was great. I was worried bc my p+7 estrogen was over 200. Even thought my lufs has been under control for awhile, I still have to hold my breath before each US. I still get excited when I see that it has ruptured. Then on the left was something that was weird. It was maybe a cyst maybe a new follicle. It was a little big for a new follicle but still possible. I know that last month I did not have anything growing over there but who knows.

I was going to try some stims again for the first time in a long time, but since I saw that possible cyst, I'm not going to risk it. That's ok. I'm a little afraid to risk lufs anyway.  Maybe next month.

I started LDN a few days ago. This is my new treatment plan. It will most likely be my last. You ease into it by taking 2mg each night for a week, then 3mg each night for a week, and then get up to 4.5 mg. The first few nights were nuts. It gave me some crazy vivid dreams that bordered on nightmares. I could not sleep. Then last night which was the 5th night, it all went away and I slept.

Other than that, I have been really relaxing on my summer vacation. I usually do summer school, but they cut that out of the budget so now I'm home. My new hobby is  pinterest, but I also have been creating stuff for my store on Teachers Pay Teachers. I also go outside to work in my garden.

The new season of Warehouse 13 started yesterday.

My Response

Thank you to all the ladies who gave me advice. It is a nice reminder to hear that I should take the high road etc when I am in the middle of a rage attack.

I gave it some time. Then I called my mom. I wanted to know what my sister's intentions were. My mom made it clear that her intentions were to just get involved in the party. I tried my best to hold back, but I cried and raised my voice with my mom. I told her that I was not mad at her, but I was so hurt by the fact that I received a business proposal after being ignored for almost 4 years. My mom restated the fact that she just wanted a small party nothing fancy. She had no ideas about my sister's grand plans.

I told my mom that I wanted to help and that I would do the invites on my own. I would also send my sister some photos for the video as she requested, but that was it and I was not going to work with her on this. We could each do our part with my mom at the lead.

Then I reread my sister's email. It was an entire page about details, details, details, like should we put a photo on the cake? what kind of cake? etc. Trivia game, family photo collage, favors etc OMG My parents are very simple folk and would be happy with a backyard BBQ. So all of this is so crazy.

Then she had a line in there about if she does the video then we can both have a creative project. Really??? I don't feel that sending out invites is all that creative. I was just going to send something out and now I am thinking that I have to make something fancy?? Most people these days get lazy and just send out evites, so I thought sending out cards was good enough.

After rereading her email it reminded me that she is a neurotic control freak. She wants to take over this whole thing and make it a major drama. She asked me a million questions.

So I thought and thought. Then I wrote the following. Short and to the point.

Hi ________,

I think it's great that you want to honor dad by doing all this stuff. Thanks for asking for my input on the video. I'll be happy to send photos. When I get the final info from mom, I'll be sending the invitations out. I spoke to mom today, so it's all set.

Simone

Need Advice About Sister Drama

I need some advice bc I am about to blow my top. I guess it does not help that last night I kept waking up with hot flashes so I did not sleep well. Today is  p+12 and I got a bfn. I know it is still early but ugh anway. Today is not starting off well.

If you have been following me for awhile you are well aware of my sister drama. If not, you can search my blog with the handy search box. She has ignored me for awhile now. I lost track but I think it has been 3-4 years.

Well this morning I checked my email and was surprised to see one from my sister's husband. It had a whole page of information about my father's upcoming b-day party in Sept. Basically he just starts writing about how he spoke to my mom and then tells me how we are going to split things up etc. I had suggested to my mom last month that I would send out the invites. Now he wants his contact info on it too. He wants to make a video etc.

Sounds great right? WRONG. at the end SHE signed it. So WTH does that mean?  It was so cold and callous. It was all facts. It just starts out like we are doing business. Now I am not sure who wrote it. Maybe it was both of them?

I am not sure what to do. I am really angry that she feels it is ok to ignore me and treat me like crap for years and then contact me when she wants something. She is a perfectionist and I am sure that she wants to control this too.

If she had given me one ounce of sympathy like, hey I know we have not gotten along but maybe we could do this together for dad...... then I would be ok bc I would think that this could be the start of a truce.
I know for a fact that she told my dad that she would never make up with me. So again WTH? It sounded like I was reading a contract and I had to agree to the terms.

I have tried to suppress my anger with my mom. I know that she does not have control over my sister, but I feel that she allows her to get away with it. My father has expressed that he is afraid that if he stands up to her that she will take his two and only grand kids away from him. OMG so I do not want to push it with them. But I feel that this has to stop. Why should she be allowed to ignore me? I have dealt with it for years, and I am afraid that I cannot hold it in anymore. I am about to go postal on someone about it.

Of course I don't need this extra stress in my life.  I don't want to deal with them. I just want to do my part under my mom's leadership.

I told my dh about the email and then he had to leave for work.. UGH what should I do?

Treatment Options

The next day dh was feeling more rational. He was just overwhelmed by everything. Even though the look on his face still haunts me, at least we got the discussion going. After the way he reacted, I started to doubt whether or not I should give up. I told him that we need to have a serious plan.

We spoke about treatment options. LIT seems promising but it is not a guarantee. We would have to travel to Mexico to get it. DH was all on board to do it until we starting checking prices. It would be a few thousand to get plane tickets, hotel rooms, treatment etc. From what I read most people get it done twice. We could do it if it were a sure thing. But the thought of gambling all that money is tough when adoption is so expensive. We are not risk takers in general.

Then there is IVIG which is given in the USA but it is very expensive. I am not sure if my insurance will cover it. I  could try and see. But again we would be gambling a few thousand dollars. This also requires a blood transfusion which make me uncomfortable.

Then I went back to research LDN. It seems that IVIG and LDN treat 8 of the same diseases. In fact, based on my google research, LDN seems to treat more things than IVIG . LDN also treat endo and some GI issues, which I have. It started to give me back some hope that the LDN could be the trick. Here are the diseases. Please let me know if there are any to add. I hoping that if there is some mystery disease that I have but do not know that it will be covered.

Today is P+7 so I have one more week to go.

IVIG

Alzheimer's Disease

Dermatomyositis

Multiple Sclerosis (MS)
Myasthenia Gravis(MG

Rheumatoid Arthritis (RA)

Sjogren’s Syndrome

Stiff Person Syndrome (SPS)

Systenic Lupus Erythematosus (SLE)

Chronic Inflammatory Demyelinating Polyneuropathy (CIDP))
Guillain-Barre Syndrome (GBS)
Autoimmune Diabetic Neuropathy
Polymyositis
Multifocal Motor Neuropathy (MMN)
Common Variable Immunodeficiency (CVID)
Hypogammaglobulinemia
Severe Combined Immunodeficiency (SCID)
Wiskott-Aldrich Syndrome (WAS)
X-Linked Agammaglobulinemia (XLA)
other connective tissue disorders

 

LDN

Alzheimer's Disease
Dermatomyositis
Multiple Sclerosis (MS)
Myasthenia Gravis (MG)
Rheumatoid Arthritis
Sjogren’s Syndrome
Stiff Person Syndrome (SPS)
Systemic Lupus (SLE)

ALS (Lou Gehrig's Disease)
Autism Spectrum Disorders
Behcet's Disease
Celiac Disease
Chronic Fatigue Syndrome
CREST syndrome
Crohn's Disease
Endometriosis
Fibromyalgia
Hashimoto’s Thyroiditis
Irritable Bowel Syndrome (IBS)
Parkinson's Disease
Pemphigoid
Primary Lateral Sclerosis (PLS)
Psoriasis
Transverse Myelitis
Ankylosing Spondylitis
Sarcoidosis
Scleroderma
Ulcerative Colitis
Wegener's Granulomatosis

Long Talk with DH About Moving on

I have been dreading having the talk with DH about moving on to adoption. Last night I finally did it and I was very surprised at his reaction.

Two years ago when the RE told us that it was IVF or nothing, we spoke about it. He said he was fine. Then we found Napro and have been doing that ever since. He has supported me with the big items like taking care of me when I had my surgeries, but I have always felt alone emotionally. He only went to two dr apts in 5 years. Those were consults and I had to persuade him to go. Every month when I get a BFN we don't usually talk about it. I don't even always tell him. He just figures it out. I feel the constant pain of failure alone every month and I feel that this burden has been building up in me.

He freaked out when I told him that I wanted to stop. I told him that I am tired of all the Dr apts, medications etc. Once the RI told us about our HLA matches, I really lost hope. I thought he understood what the test results meant. For the past 5 years, I have been able to push myself to do things that were very unpleasant in hopes of success. I could never tell myself when I should stop bc I always had hope. Now that's gone.

My dh got mad bc he said that the RI told us neupogen would solve the problem. I reminded dh that this is the 4th month on it. Last year I took it for four months, took a break. Four months again and then took a break. That was 8 months in all. Then I had polyps removed in Feb so I thought maybe that was the issue, but who knows. Neupogen raises your white blood count, so I am not very comfortable with the idea of taking it for months without end.I think the standard is to try something for 3-4 months.

I asked him how much longer he wanted to try. He was not happy with that. He said maybe 3  months. It made me so sad to see him get so upset. I guess he had not gotten to the acceptance stage yet like I had. I told him that I was the one taking the physical burden and I am burned out.  We agreed to still try the naltrexone for a few months.

I told him how I felt so alone bc he never talks about it. I told him how I think about it daily and I cry often. He said he also thinks about it daily. I never knew that.

My Head is Still Spinning

My head is still spinning from that last test result. Of all the people in the world that I could end up marrying I have to find someone whose immune system matches mine. UGH The crazy thing is that my dh grew up about 3 hours from where I grew up. We met in college and then I moved up here. I know that there is nothing that I could have done bc there is no way to tell. There is no fault we did nothing wrong. It was just chance.

It does bring me some peace to know that the main issue is shared between us. I have always felt guilty about not being able to give him children.

I  created a packet of info to send to my napro dr. I  can only imagine what he will think. I almost did not believe it myself. I copied a chapter from Dr. Beer's book to send with my lab report.

The RI said to give the neupogen two more months. This is my fourth perfect cycle in a row on neupogen and I think I am done at the end of this cycle. My LDN arrived in the mail so I am going to try that for a few months starting next month.

My cycle has been textbook again this month. I am just at peak day. I went in for my us and had a nice 18 mm follie and took my trigger.

My favorite nurse C was there and she asked me if I was mad at her bc she did not see me last time. I was so flattered that she really remembered me and thought about me. I told her that I did request her but another nurse came in. She said that when she does that they get mad at her, but if someone takes her request she does not make a big deal about it. I get the feeling that the other nurses are not totally nice to her. She is a little older and has a lot more experience. She came to my clinic about 8 months ago when another clinic run by the same Dr closed. I told her that I was so happy she is not sick of me yet. I did not tell her that some of the other nurses rush me and give me looks like I am wasting their time.

We had a nice talk and she said that she loves getting requests bc she gets to really know her patients. I want to get her something but I know that if it is public that the other nurses will make a stink about it. Women can be so mean. I have to get her a gift card and sneak it to her. She always takes her time with me and will explain everything. She always tells me how nice my lining is and she is very optimistic. I also copied the same chapter about my HLA matching to give to her next time. I know that she will be interested in this.

New Test Results Back

 

Back in May I went to see the fancy reproductive immunologist in NYC. I was upset bc he basically told me that it was my endo and that I should stop all medications. Then he noticed that he forgot to run one test on me. I decided to get that test done. It has to do with HLA matching.

Have you ever heard of when people want to donate bone marrow and they get tested to see if they are a match? My dh and I had that test to see if we are a match. This is important to fertility bc if your immune system matches your dh too much then this will cause auto immune problems and infertility.

It took over a month to get the results back. I found out yesterday and it took me all day to process the information and my emotions. It turns out that we have 7 matches in common. The dr said that 5 is borderline and 7 is a real  problem. He said the most he has ever seen was 10. This must be a big deal bc he changed his tune about not taking any medication. He actually seemed very confident that this was my problem and that he could treat it.


The only treatment that he uses with success is neupogen. I have been taking that for a while now. So at first I was really upset that I have this issue and the only treatment is not working. Then I was calm about it bc this could be the last piece and maybe I just have to stick with it long enough for a good egg to come along. I have been going naturally with only one egg a month. So it is like pulling a slot machine to see which genes will match up.  What are the odds that my dh  would match my immune system so well that we could not reproduce.

From what I can tell by looking at the report we there are 9 different categories. Each person has two possible genes in each category to donate to the embryo. So I guess there is a chance that things could line up but with only one chance a month this may never happen.

Now I have to decide how much longer I want to try the neupogen. The Dr said to give it two more months. Then I am going to try the LDN. This RI has no experience with LDN. Since LDN works with people who have autoimmune diseases, it still makes sense that it would help me with my matching issue.

I am going to try some mild stims called menopur. I have been very cautious and have not taken stims due to my lufs, but that seems under control and maybe if I can get a few follicles I will have a better chance at getting a good egg to pop out. At this point I have nothing to lose. I have had my lufs under control for over a year and that clearly was not the main issue.