Expecting The Unexpected

I just found out some terrifying, scary, happy, confusing, worst timing news.

I am pregnant.

completely unexpected.

My husband and I are only “active” every thirty to forty-five days.

I went in to the OBGYN’s office yesterday to get to the bottom of my irregular periods, cystic acne, painful intercourse, facial hair and some other symptoms.

I might have had a hormonal imbalance and needed birth control but the issue is I have a hard time with the only two options that I have for birth control. I can’t have any devices implanted or any IUDs because of the Pyoderma Gangrenousm. The shot and the mini pill turn me into a crazy person. I was ready to beg to get my tubes tied knowing that It might ulcerate out with the Pyoderma.

They did a routine urine sample and everything else.

The urine sample came back pregnant.

I was in complete shock. I started tearing up and since I haven’t been able to stop.

I was done having babies, and my husband and I were in agreement on this.

We are both in a weird happy sad confused state right now.

I have got rid of everything baby related that I had because we were done.

I need to buy everything completely new or find some second-hand options.

I really hope that I am only having one because I only have room in our minivan for one more. So if I am having multiples then we need a bigger van.

We are not sure about how far along I am. I had a blood test and have to have another on Friday to see how far.

I have had some symptoms but all have been easily explainable for possibly other things.

I have been really sick to my stomach but my whole family just had the stomach flu.

I have been really tired but my fibro makes me super tired.

The heartburn has been unbearable lately but I just thought that I was having some weird side effect from one of my many medications.

I was not prepared, I am still processing and I am really worried.

This will be both high risk for both baby and me, labor will be different because of all of my health issues, I am almost guaranteed some bed rest, I have to stop one medication and stop many more over the next few months before they hurt my baby and I have to prepare to have a fifth child.

I know every baby is a blessing, but this is just really bad timing.

I feel like I can only speak to my husband and his side of the family about this because my whole family will flip and talk so much crap and put me down and it sucks.

They will find out eventually when I am huger or come home with a baby but I really don’t want to hear their crap.

I will probably start blogging about pregnancy related things for a while and how my pregnancy goes with my back being broken, my PG, and everything else that is wrong with me.

I have an appointment two hours away tomorrow about my pyoderma so I hope that I will get more answers about how it will affect my pregnancy and unborn child.

Thank you for being here and listing.

Thank you for reading.

Advertisements

So I Got Denied SSI

Awhile back I had applied for Supplementary Security Income. I am disabled and have many health issues going on.

Part of my back is broken, an ongoing skin disease which every flare hurts like death (HS), fibromyalgia, bipolar, depression, PTSD, anxiety, RA, PG, severe asthma, and just so much going on.

I can hardly walk through my house to use the restroom.

I can’t really reach to wipe my own but without the magic wand because of the inflammation in my spine.

I can not drive because of all of my meds.

I have to be mostly reclined with my feet up most of the day.

I was Denied.

The letter states that my skin disease that will never go away has healed, that I can walk enough to have a job, that I can sit in a desk and that I do not qualify.

I have not been seen by one of their doctors only by a one of their psychiatrists.

My doctor says that I am disabled.

I have a cane and a handicap placard.

I am planning on contacting a lawyer on Monday. I think that this is unfair and I qualify in more than one way.

So As Everyone already knows, I Have Health Issues

Well two more teeth broke last night. I shouldn’t have accepted the kettle corn.

Before the pyoderma gangrenism started, before I fractured my back, before I got really sick I had tons of dental appointments scheduled to pull all of my broken teeth that have been drilled and filled over and over. I grind my teeth in my sleep and gag on the mouth guards. The plan was to get partial dentures.

Now I can not have any teeth worked on or pulled for a whole year after the pyoderma is treated misdiagnosis are confirmed.

This just adds to my list of pain.

If I didn’t have the PG I could have my pain treated and be in so much less pain.

I didn’t have dental care until I was an adult. The first time that I went to a dentist I had multiple cavities. More and more teeth began to fall apart after each pregnancy. As I started to get sick and just kept getting sick all of my teeth began to crumble.

Some advise; always take care of your teeth because they will hurt so much later if you neglect them. Also take your children to the dentist so that they can receive proper dental care.

All of my health issues stacking on top of each other are seriously making me feel like I have lost control, like I am losing the battle and nothing is getting better. I am happy that I have my husband and children to get me through this, I don’t know what I would do without them.
Here is my gofundme if anyone can help out. Thank you for reading.

I Know That It Might Be TMI But My Boob HURTS!

I have been having issues in my right breast. I had Hidritinitus Supertivia flares on my breast for about two years. About 6 months ago I developed Pyoderma Gangrenousm. I am waiting for treatment because we have to find the underlying cause before we mask it with steroid treatment.

This is beginning to not look anything like the PG. PG  doesn’t start healing on the outside, PG does not make large masses under the lesion, and PG should be ulcerating out further.

My breast “hole” is shrinking, the skin is now all thick, tough and discolored. When I touch my breast it feels  foreign.  I do feel a deep pain when ever the area is touched or bumped. I now have a mass under the skin that is larger than a golf ball that is firm and painful. I am also having thick yellowish nipple discharge. The whole site is swollen with a large dimple right where the mass is.

This does not sound like PG anymore.

I think it may be ulcerative breast cancer.

My grandmother died from breast cancer.

I am really scared.

I see a breast surgeon to keep an eye on the area but she brushed off the pain. She brushed off how last year the site had an internal mass shown on ultrasound and even said that it might just be a cyst The clinic is booked out so far that nobody answers the phone or even listens to the voicemail.

I can not wait any longer. I can not let this keep stressing me out.

I am scared and tomorrow I am going to just go back to the ER and demand a mammogram to just look at it all.

So far,before the mass got to this size, the breast doctor has said that I am too young for a mammogram and that I am too young for those kind of problems.

My grandma died from breast cancer, I will not let my family lose me this soon. I am taking action and I am going to be mean if I have to.

It hurts.

Being The Outsider In Your Own LifeĀ 

I used to be a social butterfly, I had so many friends, I could work, I could focus on school, and I was a supermom.

Now I don’t have many friends, aside from my husband and children my family doesn’t want much to do with me anymore, I can’t hold a job, I’ve dropped out of college, and I hardly leave the house unless its for doctors appointments or to get groceries. I can’t take the kids to the park or the mall, we don’t go out to anything.

All of my life I have had depression and anxiety. I had a tough childhood and got kicked out of my house at 15.

When I was younger I could do anything. I enrolled myself in highschool, I worked overnights so I would have somewhere to sleep at night and money to feed myself. I had straight A’s in highschool. I pushed myself so hard because I was all that I had.

When I was 17 I met the love of my life. We had known each other for a while before that but we didn’t really know eachother until we started hanging out. When we first kissed we both knew that we were soul mates. We have been inseparable since then.
I was staying with a cousin, drinking and making poor decisions and after I met my husband I never left his house. I stayed over so many times that his mother let me move in. I had a job and continued to go to school.

We got pregnant and had our first child when I was 18 almost 19. I then became a stay at home mom. We had our second a year later, our third almost 2 years later and our last almost 3 years after.

I started college after our 3rd child and continued until I was 8 months pregnant with our last.

I had developed many health issued between my 3rd and 4th pregnancy, hypothyroidism, insomnia, chronic bronchitis,  reoccurring strep throat, arthritis, IBS and I was just always sick.

When I was really pregnant with my last my grandmother passed away. It hurt so bad because she was someone who was always there for me.

I ended up having a small mental breakdown. I couldn’t focus on school, I was just week and sick all the time and I couldn’t function. I dropped my classes and tried to focus on healing. But since then everything went downhill.

My husband has been there through it all. And its been rough.

After my son was born I had been diagnosed with a staph infection in my breast and the bipolar symptoms really started up. I couldn’t breastfeed after 6 months because of the infection. I eventually saw dermatology and found out that it had been hidradenitis suppurativa all along. I was still constantly tired and sick.

I had planned on weight loss surgery, a breast reduction, surgery to have my tubes tied and to have my tonsils removed.

Then my breast exploded I developed  pyoderma gangrenosum. I can’t have any surgeries until its been healed for 12 months.

I since then had C-Diff for 4 months, fractured my back, developed a pars defect,and degenerative disks, then I was diagnosed with fibromialgia and celiac disease.

I am just so sick all of the time and in so much pain. My parents don’t visit me, my siblings don’t come around much and my friends arent involved unless I’m on social media.

I’m the outsider.  Life keeps going on no matter how sick I get. Everyone stopped caring after the first few illnesses.

I’ve been called a hypochondriac, and the little boy who cried wolf, by someone close to me. She had also told everyone at the last family dinner at her house not to let me help cook because I am covered in infectious disease.

Nothing that I have is contagious in any way but I am constantly made to feel like everything is, like I am a walking plague.

I am lucky that I have my husband and our children because without them I would have thrown in the towel long ago.

The Day That My Breast EXPLODED!

So as I have stated before, I have Pyoderma Gangrenousm.

It all started over a year ago, I had extreme breast pain and all of my doctors wrote it off as a pregnancy symptom. This was my fourth pregnancy and I immediately knew that this was something different.

Well I had my son and my breasts filled up with milk and my right breast hurt so much more and once again all of my symptoms were written off as something else, breastfeeding pains from engorgement.

I had gone to the emergency room for the pain after maybe three months or so of this “engorgement” and they did do an ultrasound which they said showed a cyst and refered me to the Breast Center.

The Breast Center got me in about a week later and examined the outside of my breast and couldn’t feel the lump in my giant size G breast and said that it was most likely from breastfeeding and that it would go away on its own. No further tests were done because with my age I was unlikely to have any serious breast issues.

About four months after my son was born and I had been breastfeeding in pain I started getting boils all over my chest that were warm to the touch and hurt so bad.  I was told by my family doctor that I had staph infection and that I needed antibiotics. This went on for the next nine months or so. I stopped breast-feeding because it was just too painful and I didn’t want my son to get an infection. I dried up within a week of stopping.

My family doctor finally swabbed the sites, ya know like nine months later, and it came back negative for staph so I was refered to a dermatologist who after the first look at the boils said that I had something called hidradenitis suppurativa. I was told that the breast pain was just from the HS. I was given some steroid injections to bring down swelling and prescribed  mupirocin ointment 1% and clindamycin gel 1%.

There was no staph infection and I was wrongfully put on antibiotics for so long and it was killing my gut. I did develop c-diff from all of the antibiotics and had it for five whole months. FIVE MONTHS of pain and pooping my brains out with my boys trying to sit in the bathroom almost every time. I still can’t eat whole meals.

The pain was consistent in that right breast, the boils didn’t hurt anything like it. The pain was deep and tender.

I started to get a small red spot in the right side of the right breast where this pain had been for so long, it got hot to the touch and grew drastically in size over the course of a week or so. It didn’t even come to a head or anything though.

I started feeling a hot stabbing pain and started sweating and shaking profusely. I decide to look and see how this spot on my breast looked because it was hurting like never before. My bra was full of pus and blood, my brown shirt was soaked down the front and I was in shock for a few minutes trying to process what had happened. I had no trauma or anything to the breast. I was simply walking into my kitchen when it happened. I washed up and got a large band-aid to cover the, for a loss of what else to call it, hole. I called the dermatologist and made another appointment.

Well I go to the dermatologist and they just said that it was a normal HS bump that popped and they swabbed it to be safe, cleaned it up and then injected it with steroids. (Standard HS treatment)

The swab came back clean. The hole kept growing and leaking more and more infection. I was having major irritation from anything that was taped or bandaged on. They assured me that It was probably nothing serious and gave me a prescription for silvadene cream 1%. They took a tissue sample and sent me on my way.

The tissue sample didn’t show infection but with all the leakage and how much wider the hole got they came to a diagnosis of Pyoderma Gangrenousm. I had all the dermatologists in the office looking at it and talking to each other, it was scary. PG is rare and extremely rare in the breast.

Dermatology does not treat PG. I was sent off to wound care to have the wound kept clean and treated. My dermatologist would no longer see me or advise any medical treatment, it was over their head. I had no doctors treating this disease and most did not know what it was.

I made an appointment at the breast center. When the doctor had seen the wound she had advised me to pack it with peroxide soaked gauze. It hurt so bad and she had showed me how to do it. She hadn’t heard of PG before. I had explained that my grandmother had died from breast cancer and that she had really aggressive cancer in each breast twice then in both lungs and eventually it spread everywhere. I asked for a mammogram or a biopsy and was told that I was to young to need one. (More age discrimination by a doctor.)

Well I finally get to the wound center and they tell me that the PG has killed most of my breast. The tunnels are so deep and we need to figure out why I have this. They also let me know that the breast doctors instructions were really bad for the PG. The peroxide had made the tunnels even deeper and probably increased my healing time by months and possibly years. My wonderful wound center people took down all of my breast doctors information to inform her of this. After we find the underlying cause I can start treatment and then have surgery to remove all of the necrotic tissue.

I have a size G breast cup and to have that much necrotic tissue is so painful and could lead to further issues and infections. I will not have a right breast after this is over and wont be able to have any surgeries after for a whole year to make my chest look somewhat normal. I will have a single G cub breast for a whole year.

No doctor is on the case to get the disease under control. I was told by a rhumatologist that I had to have chrons because that’s all that could cause this. (I hated this appointment with the rhumatologist and I will NEVER go back, I will tell that story another time, you will want to hear it.)

I had an appointment with GI and testing, NO CHRONS! None, but we are looking into the possibility of celiac disease being the underlying cause. I’ve had blood work and everything so just waiting for it to come back.

It has been five months so far with this breast dying and my whole body going through hell. Something has to give.

All of this physical and emotional stress is really starting to get to my family and to me. I have started therapy and will see a psychiatrist in two weeks to help with the mental side of everything going on.

The Pain Dr had sent a notice to the CDC doctors to clear me for epidural injections so maybe they will decide to treat me now.

The Lack of Pain Relief For The Younger Generation

Hey,

Today I want to discuss the lack of pain relief options for those with chronic pain under the age of forty. I am twenty-five and I have chronic pain. I have a Pars Defect, Fractured L5 disk, degenerated disks all up my spine, The fractured disk is also herniated, budging and dislodged. That is just part of my pain. I’ve got Pyoderma Gangrenism in my right breast and it hurts so bad. The whole breast is full of necrotic tissue. I also have my Fibro stuff, and with everything else I am in a constant flare.

If I didn’t have the pyoderma I would be eligible for epidural injections to bring down the pressure, which would bring the pain level down and also fix some of my nerve problems. Right now I am only allowed Hydrocodone acetaminophen 5-325 every 8 hours, which does not really help too much.

I am loosing my mobility, my ability to use the restroom, my mind and slowly my life.

I feel like I am being discriminated against because of my age.

So far I keep having to just push through, my kids need me and my husband needs me. I have four little ones to wake up with every morning, to get dressed, feed, send two of them to school, entertain the younger ones, make lunch, clean house, prep dinner, do homework with the older two when they get home, make dinner and feed my family, clean up dinner, get kids showered and ready for bed, and then I have time to worry about my resting to get better.

I do not have time for pain, I don’t have time for sickness but i constantly have them both fighting to be in my everyday life. I need to be stronger, but for some of that I need proper pain management. One of the key parts of healing from Pyoderma Gangrenism is the pain management so it’s not inflamed creating more necrotic tissue, so far I do not have a doctor managing my pyoderma, I just get passed all around until some doctor somewhere figures out the underlying cause.

I know that the underlying cause is not chrons, rheumatoid arthritis, or lupus. I am now having the testing done to check for celiac disease. So far that seems the most likely because I have a gluten sensitivity and I can’t keep pasta down and when I eat bread I feel icky. If it is not celiac we go hunting for cancer… I am hoping for celiac because it seems like the lesser of the possible problems.

I need to get better, I need to live longer, I need to survive.

I know that I will make it if I hold on and if I don’t give up. My family needs me.