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NF's effect on me, including freckling and outer fibromas


1. Cafe au lait spots

2.  PAIN. My pain is currently centered in my right pelvis. I also have pain where smaller tumors are (my right hand, my skull, my toe, for example). I have "pain spells" that last up to two weeks. The pain level is a 10. When the pain is on smaller areas, that pain level is between a 5 and 8.

3. Constant neck problems, caused by a plexiform tumor in the right side of my skull. This tumor looks like a ginormous 20 leg insect, with the "body" centered under my cheekbone and "legs" wrapped around my ear, sinuses, jaw, extending to my neck.


4. A slighly deformed skull due to the tumor described above. You can see how the bone is raised in my right temple area.

5. SLOWLY deteriorating vision (including worsening color blindness) in my right eye due to an optical glioma

6. Short stature

7. Scoliosis

8 - NF brain! :)

9. Smaller outer dermal tumors/fibromas

10. Lisch nodules


Pain caused from NF is very draining- not just physically but mentally.

I cope in several ways:

1) Pain medication and being in constant contact with doctors regarding doseage. I currently take oxymorphone for my tumor pains. I have been on this medication since August 2016. It is more effective than oxycodone.

2) Using a heating pad during pain spells. I have also recently tried heat patches- those do provide some relief!

3) Seeing a pain therapist. She gives me relaxation exercises to help my mental state.

4) Massage therapy.

5) Blogging- talking about it helps me!

6) SUPPORT FROM FAMILY AND FRIENDS

7) Exercise, sometimes physical therapy.

8) CONSTANT communication with my medical team: my NF doctor, my PCP, my pain doctor, my pain therapist, my gynocologist, my gastroenterologist, my pulmonologist and other 'ologists' that I can't think of now.


Freckling:

On my belly- you get the idea- they cover my entire belly




On my arms




On my legs






My neck


My back looks similar- so does my butt. HA.


MEET MY FIBROMAS/TUMORS!

Bob- on my right foot- will never get rid of him, even though he hurts me sometimes! My doctor said he could cut it out, but to me it's almost murder...I noticed him for the first time when I was 8 but could have had him longer. It grew a bit since I was 8 (it was small then), and still continues to grow a tiny bit.


Rosie- this is on my right hip. She doesn't hurt me at all. In fact, I could pinch this fibroma and not really feel anything at all. Just sticks out like a sore thumb (or a weird looking nose) when I wear a bathing suit. I'm not as close to her as I am to Bob, but she doesn't hurt, so no point murdering her...I don't remember when I first noticed her. When kids see her (when at the beach or at the pool), they are horrified, amused and amazed at the same time.


Rosalita- about 8 1/2 inches above Rosie, more on my back.


Handel- on my right hand I noticed this one when I was 19. Thought I had a spider bite. Affects me when I type a lot or use my hands a lot. When this hurts, it hurts a LOT. The fibroma becomes red, as does the muscles it touches. Yes, his name is Handel because it's on my hand.
.

Pip- this is on my LEFT shoulder (front facing). Also doesn't hurt. Babies like to press it when I hold them, so I make weird noises to confirm their curiosities.


Maude- on my left arm. Doesn't do anything. Photo actually makes it look bigger than it is


Others with no names:
On my left bottom thigh


 
On my upper left thigh

 ---

I have others similar to Maude and Rosalita and the 2 "unnamed" all over my body but those are the ones I can get pictures of best. There are a number of them on my back, and one on my knee, and a tiny fibroma (under the skin, but noticeable) on almost every single fingertip.



PREGNANCY INDUCED FIBROMAS

I got pregnant in May 2013. By August, I had many new fibromas throughout my body. These photos were taken in mid December.

Below is a picture of my back and of my belly. These were taken while still pregnant.


New Fibromas all over my back. I used to have one or two before pregnancy. I have tons cafe au lait spots, but none are new. Just the fibromas are.   Ps Don't hate me for not looking 9 months pregnant from behind :-P

Fibromas that sprouted on my belly (my 9 month preggo belly!)



Additionally, my facial tumor swelled and caused great pain in my face during the last month of being pregnant. Since delivering, I have had no more pain from that tumor.

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